Don Spencer's Artifacts

An Unwanted Journey: Day 1398+1 - "Obituary"

2009-09-21T16:29:00.003-04:00

DONALD DOUGLAS SPENCER
1953 – 2009

Don died Sunday, September 20th after living a full life for 56 years. He died at peace, with his family close by. Cancer was part of that journey, but not nearly as important as sunshine and happy days, the wonderful years of love and growth of his wife and sons, work that he accomplished with pride, friendships that lasted a lifetime, and at peace with himself and those that mattered most to him. In this wild and wondrous universe, his journey is complete, like a pebble dropped into a pond and sinking to the bottom, but with waves rippling indefinitely and extending in all directions.

Don leaves behind his beloved wife of 36 years, Marg, as well as his cherished sons, Ian and Patrick, of whom he was incredibly proud.

Remembered fondly by his father, Don of Barrie; his brothers Steve, Michael (Janice), Paul, Eric, Brian, and Jason (Jeanne), and his sister April. Don will be sadly missed by his mother-in-law Hannah Moor and sisters-in-law, Sharon (George) Dangerfield and Ruth (Norman) MacLaren, as well as many nieces and nephews

Predeceased by his mother, Margaret Jean and by his brothers Gregory and Randy.

Cremation has taken place.

The service to celebrate Don’s life will take place at the Erb & Good Family Funeral Home, 171 King Street South, Waterloo, on Saturday, October 3, 2009 at 2:30 pm. Following the service everyone is invited to the Fireside Reception Room of the Funeral Home for refreshments and a chance to share stories and meet with the family.

Many thanks to Dr. Keleher, CCAC and Paramed- especially nurse Laura U., as well as the doctors and nursing staff at Freeport Hospice.

Condolences for the family and donations to the Grand River Regional Cancer Centre may be arranged through the funeral home at http://www.erbgood.com/ or 519.745.8445.

In living memory of Don, a donation will be made to the Trees for Learning Program by the funeral home.

An Unwanted Journey Day 1398 - "Journey's End"

2009-09-20T11:45:00.005-04:00

I have unfortunately been the bearer of bad news on this blog, filling in for my father when he was unable to. I must perform this duty one last time. Don passed away quietly this morning at Freeport hospice after a four year battle with cancer. He was able to be comfortable in his last days and did not suffer.

He did not pass away alone, but surrounded by the love and care of his family and friends. I thank those who were able to visit him in his last days.

Don's obituary will be run in the Kitchener Record within the next few days. We will be holding a memorial service for Don in the near future, and i will update the blog with his obituary and details for the service in the near future. My brother and I will be moderating comments on the blog as well as checking Don's email. Your well wishes and thoughts are appreciated.

I. Spencer

An Unwanted Journey Day 1389 - "Slip"

2009-09-11T21:36:00.004-04:00

As is to be expected with all terminal diseases, Don's condition is deteriorating. Expected but not any easier to comprehend. But what had been a gradual slip is beginning to become a quick slide. Don is now very weak and jaundiced. He has a difficult time focusing and can only speak in whispers. He sleeps for much of the day and conversation tires him quickly. Don is no longer as cognizant of what is going on around him. This is not to say that he is suffering; The pain management at Freeport has been excellent and he is comfortable.

Visitors are still welcome but please adjust your expectations accordingly. Either myself or my brother are checking and moderating comments on the blog and have been passing on your wishes and comments to Don.

I. Spencer

An Unwanted Journey Day 1386 - "Freeport"

2009-09-08T21:07:00.006-04:00

Today Don was admitted to Freeport Medical Centre for hospice care. We could no longer provide the care necessary for him at home. I was impressed with the facilities and staff at the Centre and feel confident he will receive the appropriate care.

It was a difficult decision for our family to have Don move to Freeport for continued palliative care. But Don realized he needed some extra help that family could not provide. It will be very different not having him in the house but in the end it is the best choice for all involved. I'm sure we will be spending a lot of time at the Centre.

Thanks to all of you who have supported him so far.

I. Spencer

An Unwanted Journey: Day 1368 - “It is what it is…”

2009-08-21T22:17:00.001-04:00

I am having M write this blog because of my extreme fatigue and increased confusion these days.

The palliative care doctor was in today to review the results of the hospital procedures earlier this week. He had been in consultation with the general surgeon who had tried to perform the ERCP, without success. They had reviewed the other option of a drainage bag but the risks involved outweighed any of the short term benefits. We will be trying a course of steroids for a few days. If any of the blockage is due to inflammation, it may allow for a bit of natural drainage of the bile.

There is no further treatment available and the prognosis is now a matter of days or weeks. I cannot commit to any further blogs or tweets. Family members will do what they can.

An Unwanted Journey: Day 1360 – “They Call Me Mellow Yellow”

2009-08-13T21:19:00.001-04:00

M. asked me this afternoon after I had spoken to the palliative care physician, “Do you feel scared?”

“No. You and I have been through all the scenarios and considered the consequences. I just wish we had a better schedule. Everything is happening just a little too quickly now.”

The CT scan of 17-Jul and the blood work from that period were, in general, unremarkable. But then, about 8 days ago, I started having jaundice symptoms. So we scheduled an ultrasound which, unfortunately didn’t give us much more information. Then, we scheduled another CT scan about three days ago for the 27-Aug.

To me, the delay in test dates meant that there was less urgency. But then, my palliative care physician called Monday of this week and had me get the blood work done earlier. The next day I had the test done and then heard back from the palliative care physician today with news that we were accelerating the CT scan. Evidently, the bilirubin and liver enzymes were all very high, demanding immediate attention.

So next Monday I will have another CT scan followed Tuesday by a procedure with a general physician called an ERCP (depending on the results of that CT scan). The hope is that we can use a combination of a an IV and the endoscopy to ensure better drainage out of the liver thereby eliminating the jaundice and giving the kidneys a better chance at eliminating the bilirubin.

Obviously, I’m not a specialist and much of what is being proposed is mysterious. All I know is that I am extremely tired all the time, that my skin is turning yellow at an alarming rate, and that I and my family are very concerned at the turn of events. We all know that the progress of metastatic colorectal disease will eventually lead to loss of liver function and death.

Because we really don’t know how the timetable will sort itself out, I will contact those who have recently tried to arrange visits.

An Unwanted Journey: Day 1333 – More Information, More Choices

2009-07-17T18:56:00.001-04:00

About a week ago, my wife took me to the Medical Imaging Department of the Grand River Hospital for a CT scan of the chest, pelvis and abdomen. Monday, my palliative care physician visited my wife and me to review the results of both the scan and some blood work done a couple of weeks earlier. Since Monday, I’ve been updating friends and family about the test results, hoping that in doing so, a fresh perspective will emerge, simply from the telling. But it’s not that simple.

In my experience, I often find an appropriate perspective simply in relating medical test results to those who care for me yet may not be well informed about what they mean. For them, whether the test results are good or bad or somewhere in between depends on the spin that I provide, on the tone of my voice, on my facial expressions, and, if my wife is present at the time, on the congruence evident between us.

For some reason, this week has been particularly difficult in providing a framework for the test results to friends and family. As you might expect, people want to know whether the results are good, bad, or indifferent. But I can’t really summarize for them until I’ve determined their meaning for me. And that is still a work in progress.

What I can say is that since the CT scans of September and November of 2008, there is evidence of substantial growth of the lesions on the liver. Two of the lesions have joined together. I am also now getting measurements in both length and width, whereas before it was just length.

The lesion on the left hepatic lobe is now 9.6 x 4 cm. On the right side (the side in which the lesion is very close to the biliary duct) the measurement is 4.2 x 2.7. I guess all I want to say right now is that the measurements indicate substantial growth, but not faster than what I would have anticipated. No other lesions are evident, either on the liver or the abdominal wall. That is good news.

The scan also indicated that the IVC filter has caught material from a clot which presumably has come from the leg. That filter is now 2/3 full, meaning blood flow is now limited to 1/3 of the device, although there is probably additional, supplemental blood flow through the growth of other veins. We will have to consult with other experts about what this means. For example, can we replace the IVC filter, or add another filter above or below the existing filter? The goods news is that without the filter, I would almost certainly have suffered other pulmonary embolii which could easily have resulted in death.

Finally, there is no evidence in the CT scan of regional recurrence of cancer at the original site in the rectum.

Blood test results are not remarkable.

So, this leaves us with some homework to do. I might consider chemo again, especially if there is reason to suspect that I would then be eligible for a trial with Erbitux. But that will mean consultation with a haematologist at the very least. It will also mean reconsidering staying under palliative care.

Because there are so many variables and options to consider, I am having a difficult time determining next steps. Given my negative experience with chemotherapy, I’m tempted to simply stay the course under palliative care, to consider the time available to me as a kind of short-lived retirement, albeit with a lot of pain management and restrictions on my mobility.

Currently, if it weren’t for the pain, life under palliative care would be acceptable. Even with the pain, it’s not a terrible way to approach one’s own death. Chemotherapy might simply add more disruption and pain without extending my life expectancy significantly.

What to do? What to do? My immediate family members are leaning towards continuing what we are already doing under palliative care. The idea is simply to get as much quality of life as possible for as long as possible. With them, I think its hard enough seeing me suffer pain with existing palliative/home hospice care. But add to that what I suffered previously and quality of life disappears very quickly.

In any case, thinking about my available choices will consume much of my time and energy over the next week or so.

An Unwanted Journey: Day 1327 – On the road again

2009-07-11T01:12:00.001-04:00

I gave my bicycle away today. It would have been unthinkable a few years ago, unless I was feeling very generous and wanted to justify the purchase of another model during this year’s Tour de France. But today, it just made good sense…and, after all, it was a gift to my son.

Bicycling has been a significant part of my life since those days when I delivered newspapers in Barrie, Ontario – The Globe & Mail in the mornings and the Toronto Telegram in the late afternoons. As an adult I continued to ride recreationally, enjoying the solitary nature of both trail and road cycling, not to mention the toys and gadgets one could purchase. Probably my favourite add-on in recent years was my gel seat, something which helped fight the dead-tushie syndrome from riding for two or three hours on the back country roads of Waterloo Region.

Friends often warned me that my hobby could lead to prostate disease, so I made sure to get an annual rectal exam from my family physician. I’ve never had prostate cancer, but after diagnosis of colorectal cancer in November 2005, the occasional thought has crossed my mind about a correlation with that disease and the frequency with which I rode my bicycle over the years.

I don’t believe there is any correlation. In fact, in my unwanted journey with the disease, the one physical activity I thought I might take up again would be bicycle riding. But it never happened, not only because my buttocks have been the source of virtually unending discomfort and pain, but because my wife has vetoed any initiative to try it out again.

Still, the bicycle, the gadgets, the expensive bicycle stand – they’ve all remained in our garage awaiting “better days”. But now that I’m in palliative home care and my son needs inexpensive transportation, I’ve given the bicycle to him.

He seems quite keen on getting started. Today, he and my wife took the bicycle in for a recommended cleaning and tune up. He’ll be buying a helmet and gloves right away too. And then, if he’s anything like me (and he is) the gadgets will start beckoning. In addition, he’ll be finding the best routes to take to the university in the fall, the best trails to explore, and roads which lead to simple physical bliss.

And what about me? My unwanted journey will continue without the bicycle. Next week, I’ll get the results of my CT scan and blood tests. I’ll proceed with Isaac Asimov’s Robot series after having just finished the Foundation series. I’ll receive more visitors in my home and in the backyard. I’ll get my wife to take me for car rides and maybe even a trip to a mall with the portable wheel chair. In other words, I’ll enjoy my forms of transportation – real and imagined – and watch my son’s enthusiasm for bicycling grow.

An Unwanted Journey: Day 1318 - Looking too good to be terminally ill

2009-07-02T14:02:00.001-04:00

Some who read this blog do so because they’ve been diagnosed with colorectal cancer. In fact, at least some health care providers in the Waterloo Region habitually encourage newly diagnosed patients to read this blog. They do so both for its sometimes brutal realism, as well as for its optimism and useful references.

I’d love sometime to get together with other patients to talk about an experience that some of us might share. That experience relates to people commenting on how well you look.

“Gee, you look really good, Don. If you hadn’t told me that you have terminal cancer, I wouldn’t know that there was anything wrong with you at all…OK, maybe that cane that you carry with you might be a clue. And you’ve lost weight. Come to think of it, you’re also looking pretty pale these days. And there are those grimaces that momentarily capture your face, and moans we occasionally hear from the main floor bathroom.”

My wife will then offer up her perspective.

“You know, as soon as you leave today, Don will probably have an extended nap to recoup energy. And if you were here in the evenings and night, you would see those times when the pain level is far higher than it is at this moment. You’d also see how difficult it’s been for Don and his medical team to balance the pain medications to make his life bearable and to avoid delusions. In fact, almost nobody thought Don would make it beyond Christmas last year. From my perspective, it’s almost miraculous that he’s still here entertaining visitors.”

The common wisdom is sometimes stated as follows:

“If you feel good, then you are good.”

“If you look good, then you are good.”

My response tends to vacillate between some variant of common wisdom and a more scientific perspective. Science, for instance, offers us ways to extend our senses, to take measurements and devise statistics that are more finely tuned than the rather crude “feeling good” and “looking good”.

Common wisdom is where I go when I’m overwhelmed with all the statistics. When I can understand the measurements and statistics, then I put common wisdom back in the tool bag for another time.

What does it matter?

With most people, it really doesn’t matter how well you feel or how good you look. But with people who really care for you or whose care giving requires specialized knowledge and measurements, then it can be frustrating communicating with them when you sense that they don’t have the complete picture.

On an emotional level, if a family member tends to discount your concerns because you simply look good at the time they are with you, then you have to deal with the frustration and determine whether or not to risk telling them that they just don’t get it. With concerns you might have with health care providers, it’s much easier; you simply insist that they get the big picture one way or the other before they start a procedure or ask you to follow a new routine.

What to do?

I’d like to hear from some of you about how you’ve resolved the emotional frustration of dealing with people who you sense don’t understand the seriousness of your medical condition. Sometimes, perhaps, it’s the other direction. You mention cancer and they have you already in the grave. But most of the time, the frustration is in sensing that the other person doesn’t get how sick you really are.

Having said all that about emotional frustrations and difficulties in communicating, I have to admit that my overall journey has been remarkably positive. I’ve seen people open up and share difficult topics with me – difficult for both of us. I’ve seen people struggle with how much or how little to say, with the overall result being an extension of healing in both directions. I’ve sometimes had to switch roles from patient to psychological counsellor, again with generally very positive consequences. Like so many other important relationships, my unwanted journey has revealed opportunities for growth and enrichment.

An Unwanted Journey: Day 1310 – Kudos to our team

2009-06-23T12:11:00.001-04:00

I am really impressed with the palliative care / home hospice services offered through the Grand River Regional Cancer Centre.

Sure, the bad news is that cancer is going to eventually get me – maybe directly, maybe by something like a heart attack, a pulmonary embolism, or liver failure. But everyone has to make an exit at some time. Not everyone gets to prepare so completely for their death. Nor does everyone get exposed to the full range of services offered through the provincial/regional cancer care organizations.

I hear, from very good sources, that the Waterloo regional cancer care, especially the palliative care services, are among the best anywhere in the province. In addition to such testimonials is my own experience. Here’s is a recent one that demonstrates how it works here in the region.

Last Thursday, we were visited by the coordinator for Paramed (the specific organization providing in-home nursing services) and the nurse practitioner working with the doctors providing overall medical care for hospice/palliative patients. During that meeting, as they heard me talking about my personal need for more information about the progress of the disease, they decided to ask for a CT scan. Those CT scan images should tell us how quickly the liver lesions are growing. They might also show if there is any significant fluid build up in the abdominal cavity.

Evidently most patients are content with knowing the bare minimum about the progression of their disease. I’m not satisfied with simply receiving symptom relief. My visitors that day recognized that emotional need and adapted the care I was receiving to accommodate my need for information.

Then Friday I came down with what appeared to be stomach flu symptoms. By Friday night I was feeling nauseous and actually vomited for the first time since beginning to receive cancer care, including radiation and chemotherapy. Saturday and Sunday, my appetite disappeared completely. By Sunday night, even though my body temperature was normal, I became increasingly anxious. I was short of breath, had heart burn, had hot/cold feelings switching in a matter of a few moments; then I started to sweat, followed by even more anxiety.

We decided to call Paramed to get some nursing consultation since I wasn’t scheduled for another in-home visit until the next Tuesday. We got a call back within about 15 minutes with my wife explaining my situation to a nurse who knows my situation and care very well. She explained all the possible causes, including a mild heart attack, acid reflux, progression of the disease which might be pushing organs up through the diaphragm, or an anxiety attack. She also went on to talk about what to expect should I go to the hospital worried about the possibility of a mild heart attack, talking about the DNR I have already signed (Do Not Resuscitate). Upon her advice I took some more pain medication and some additional anxiety medication and tried my best to get some sleep.

Sunday night was very tough, especially as I considered the prospect of my death being far more imminent that I had anticipated.

Monday morning, a Paramed nurse (the same nurse we had consulted the night before) came and took my vitals, reassuring me that my blood pressure and heart rate were all normal, making the heart attack possibility unlikely.

Later in the day, the palliative care doctor caring for me came for a visit to discuss everything that had happened over the past week or so. He also gave me a thorough physical exam. He confirmed that a CT scan would be scheduled along with complete blood work. He suspected, given the many variables, that I had suffered through a viral infection.

Sure enough, after that visit, the heart burn started to recede, my appetite started to reappear, bowel movements began again, and I found myself sitting outside with my family in the cool of the evening while they ate supper and I nibbled on some crackers.

Clearly, anxiety is an insidious thing, making difficult circumstances worse than they truly are. But my care givers, including my wife, responded quickly and appropriately allowing me to recover my bearings and achieve some balance.

Whatever the news I’ll get from the blood profile and the CT scan (scheduled for Thursday, July 9th), my health care team deserves high praise.

An Unwanted Journey: Day 1306 – Uncertainty and Humility

2009-06-19T14:18:00.002-04:00

My wife went to a retirement party recently. Before leaving, she asked me, “What do I say when people ask me how you’re doing? Just the standard, ‘We’re taking it a day at a time. One day he’s doing reasonably well, the next he’s bedridden and in a lot of pain and sleeping whenever possible.’”?

She returned from the party pleased with seeing old friends and colleagues. Evidently, a lot of people asked about me and about how she was handling the daily care-giving responsibilities. This blog is a handy resource for answers to questions about how I’m dealing with cancer, but there isn’t anything here illuminating the care giver’s experience. About all I can offer is a platitude that it takes a strong and confident partnership to make cancer care work and a marriage healthy.

These are uncertain days. As I’ve said before, being on palliative home care means that there are no regular CT scans or MRIs or even complete blood work profiles, CEA measures and so on. There are regular visits from the palliative care doctor from the Grand River Regional Cancer Centre every two weeks or so, and even more frequent visits from nurses. But apart from symptoms like pain, appetite, bowel movement frequency and characteristics, voiding profiles, fatigue and drowsiness, nausea, loss of breath, etc (all part of the standard Edmonton Symptom Assessment System – ESAS), I really have little objective information about how the disease is progressing.

It actually takes a lot of humility to accept the status quo. If you, like me, prefer more information, then hospice care can be frustrating. At its most basic, home hospice care is about keeping the patient as comfortable as possible until he/she dies. The professional care givers can’t answer questions about how the disease is progressing apart from the fairly obvious.

I’ve asked for special treatment because I thrive on knowing as much as possible about the progress of the disease. I’ve asked for a CT scan to tell us whether the liver lesions are growing, how fast they are growing, and whether those other lesions in the abdominal cavity are getting large enough to be seen on the scan images.

Visitors, whether nursing staff or simply family and friends, continue to tell me that I’m looking good, surprisingly so. As it is, I’ve survived far longer than even the palliative care doctor would have expected when he first started visiting me in November 2008. My wife and I continue making a good team. We’re really good at this!

So whatever the CT scans have to tell me, I’m happier today realizing that I’m going to have some objective markers soon to answer the continuing question, “How are you doing?”

An Unwanted Journey: Day 1286 – Sci-Fi Dreaming

2009-05-30T14:21:00.001-04:00

May 2009 has been a month of pain and milestones.

Although neither I nor my hospice medical team have isolated the cause for the increased pain, we’ve made some progress on dealing with the symptoms. I’ve increased my use of dilaudid for occasions when I need to break through the pain, going from an optimal 2 or 3 times a day to sometimes as high as 12 pills when nothing else seems to bring relief.

It may be that I’m suffering some bursitis. One way to treat that is to use some anti-inflammatory medication. But because of the side effects of doing so (bleeding from gastric ulcers being the most worrisome possibility), we’ve left that as a last resort. Instead we’ve increased my gabapentin by a single caplet late at night before going to sleep. That has meant increased nightmares, some mental confusion, a lot more muscle twitching, and increased fatigue.

To give an example of fatigue, I regularly get up at 8:00 am for medication and breakfast. Afterwards, I tend to go back to sleep until fairly late in the morning. The rest of the day I tend to snooze unless there is something to focus on such as a book I’m reading, watching the NBA play off action, or talking with members of my family. I have not visited with friends or colleagues much at all in May.

Fatigue is insidious. The worst part is that when you’re not sleeping or snoozing, you feel like you’re watching your life rather than actively participating. If you add increased pain, fear of bowel incontinence, muscle twitching, and occasional mental confusion, then it’s obvious why I haven’t been out of the house much at all for this month.

On the other hand, I have enjoyed reaching several important milestones this month – our 36th wedding anniversary, my wife’s birthday, Mother’s Day, and my own 56th birthday. In another week, we’ll be celebrating my eldest son’s 22nd birthday. So despite the challenges, I am grateful not only to have been here for those milestones, but to have been in reasonably good shape, well enough to have thoroughly enjoyed the limited celebrations for each.

Reading has been and continues to be something which I can do, stealing time when in the washroom, when I’m well enough to sit outside in a well padded chair, or when TV is too dull or an NBA playoff game outcome is obvious.

During May, I’ve dedicated my reading to science fiction, especially the works of Robert J. Sawyer. I borrowed the Quintaglio Ascension trilogy from the Kitchener Public Library and received 4 more Sawyer books for my birthday, having just completed reading 2 of them already since the 20th of May (Mindscan and Rollback). I also purchased and read his most recent book Wake and have just started reading Flashforward. Identity Theft will follow soon.

With the release of Star Trek in theatres this month, I’ve reflected on why I am such a sci-fi fan, especially of the Star Trek movies and television series (not so much the universe of books). To put it simply, Star Trek assumes an optimistic view of the future. So too does the work of Robert J. Sawyer.

As I approach the end of my life, optimism about the future, about the survival of humanity despite technology to destroy ourselves, about a world where cancer can be beaten … all these things bring me comfort. I wish the technology was available now to allow me to survive. But someday it will be available, perhaps even during my sons’ lifetime.

An Unwanted Journey: Day 1259 – Frightened and Fascinated

2009-05-03T17:42:00.001-04:00

It’s a phrase I heard this week on CBC Radio One’s The Current. They were discussing the so-called “narrative arc” of the world’s most recent health scare, the swine flu, just upgraded by the World Health Organization to a level 5 on a scale of 6 (see the CBC article here). For the narrative to work according to expectation, there must be a moment when the reader or viewer is confronted with an ambivalent feeling of being both frightened and fascinated.

The narrative arc of my own unwanted journey has delivered fear and fascination repeatedly. Given the anatomy of colorectal cancer, maybe it’s more accurate to speak of a narrative arse. That’s an approach used to good effect by Neil Crone and others responsible for the 5th annual Crack a Smile Comedy Night to benefit the Colorectal Cancer Association of Canada. Like anyone else who enjoys laughter as the world’s best medicine, I’m more than happy to set aside discussions of the life-threatening nature of the disease, and to step away, even if only momentarily, from my terminal condition prognosis.

But eventually, one must return inevitably to the frightened and fascinated person dealing with this particular narrative arc. Again, because palliative home hospice care doesn’t have much to do with medical technology, I don’t have CT scans and MRI images to consult telling me that the liver lesions are growing or diminishing. I don’t have regular CEA blood tests indicating the changes of antigens indicating the progress of cancer in the body. All I have to go on is how I feel.

In other words, despite my fascination and curiosity, my daily life proceeds much like anyone else’s. Like most other people, except for the prescriptions, the Monday-Wednesday-Friday nurse visits (now with the nurse calling and going through a phone triage for the swine flu scare while sitting in her car in the driveway; depending on my answers, she either comes inside or notifies medical authorities about possible flu concerns), and the visit from the hospice doctor every couple of weeks…except for those things, I’m like most other people.

That’s where the fear, depression and anxiety surface. I keep surviving – that’s the good news. This month will see a few more milestones crossed off my list, including our 36th wedding anniversary tomorrow, M’s birthday the following week, my birthday the week after that, and then my eldest son’s birthday in early June. Back in late December, thinking such thoughts was a bit of a stretch. Now, I see no reason why I will not only survive, but be doing well enough to celebrate - quietly, to be sure, but with as much gusto as I can muster.

The bad news is that I have no idea how much longer I’ll continue like this before the inevitable decline occurs.

But I fully intend to enjoy all the moments and milestones I can. I’m going to get up, do some more reading and writing, enjoy the spring weather, take some photographs, purchase Starbucks coffee, talk with friends on the phone and during visits to our home…in other words, push the worries aside as much as possible.

An Unwanted Journey: Day 1252 – Sabotage!

2009-04-26T20:54:00.001-04:00

A prognosis of a terminal illness is sabotaged continuously. How? Well, when you take the opiate-based pain medications, you want them to work their magic. You want to be pain free. But the price you pay for being pain free is that you are participating in a disappearing act.

“Maybe the prognosis was wrong. After all, I feel pretty good right now. If all it takes is a little fentanyl patch on my shoulder and an occasional pill, then perhaps all this talk about dying is exaggerated.”

Then, sometimes, a couple hours later, as you moan in frustration at the rapidly increasing pain in your buttocks, you get up and reach for another dilaudid.

“This really sucks! This morning I felt great. Now I feel shitty. I guess I was stupid to wonder about the accuracy of my prognosis after all.”

That’s the most common form it takes for me.

But, the conspiracy can take even more subversive forms and involve other people.

“You know how they talk about a person with cancer wasting away until they are nothing but skin and bones? Well, that’s not happening to Dad. He still has an appetite; he still gets dressed and looks good after cleaning up and shaving. He still tells jokes and is as sarcastic as anyone else in the family. Dad looks good for an old guy and is writing. It’s almost like he doesn’t even have a disease, much less something serious like cancer.”

True, the voice of a son trying to make sense of it all will naturally gravitate towards optimism, towards a wish that he desperately wants to become a reality. But when he expresses those thoughts, he is unintentionally aiding and abetting the conspiracy - “the prognosis must be inaccurate after all.”

When summarizing my condition over a few weeks or even a couple months, the pattern seems to be that there are simply good days and bad days; more specifically, days when part of the day is good and part is bad. Again, over that longer period of time, it seems that those days that I can categorize as having a “mixed” pattern are becoming more frequent.

Because of the “pattern”, I find myself entertaining visitors less frequently, often having to postpone or cancel a visit because I have become too ill or fatigued or simply unable to deal with the pain I’m experiencing to “pull it off”. I don’t trust myself as much either. That quick trip in the passenger seat to pick up a coffee at Chapters becomes a major undertaking, a calculated guess about the time required and how close I will be at any specific time to a washroom. Additionally, sometimes I will find myself with my cane walking down the driveway with a plan to walk around the block, but only having enough energy to make it a few houses down the street.

Whatever is happening, it’s becoming less predictable. Being the controlling type personality that I am, I regret and resent it. Sometimes this means that the smile on my face may be a little forced at times. The pain, unfortunately, when it makes itself known in my facial expressions…well, there’s nothing forced about that.

An Unwanted Journey: Day 1249 – My Brother’s Video Tribute

2009-04-23T19:17:00.002-04:00

Created by Michael Spencer: Google video tribute to Margaret Jean Spencer

An Unwanted Journey: Day 1249 – My Own Tribute to Mom

2009-04-23T11:16:00.001-04:00

Being grateful that I was merely able to be at the memorial on Saturday past, my own contribution was relatively short.

*****

Mom was the single most significant influence in my life. She chose to give me life, even when many would have counselled a young, unwed pregnant teenager to do otherwise. That choice meant she would forego post-secondary education and a career for herself, instead raising a large family on a single household income.

Throughout my life, she consistently sacrificed her own future for that of her children. She offered advice when asked, and even when not asked. But whatever the issue, whether we chose wisely or not, she honoured and respected her children, never once suggesting that her sacrifices entitled her to veto our decisions. To this day, I am still amazed that she and Dad didn’t suggest that I wait a few more years to get married [M and I married when we were 20 and 19 respectively].

She saw some of us make mistakes. And she made her own mistakes. But love, family, respect, trust, faith and honour were always part of her unspoken and unwritten creed. She taught us to be honest with one another, to fight fairly, to admit our mistakes, and to struggle for what we believed was true and good and beautiful.

Mom and I disagreed on many issues, some of which were fundamental and some inconsequential. But whatever our disagreements, we both loved life and honoured the mother-son relationship. This meant that, as a mother, she suffered great sorrow when I was given a prognosis of a few weeks or months with terminal metastatic cancer. It meant that even during our last visit together in Kitchener, we argued with each other, and then hugged and cried and wished that life’s absurdities might be otherwise, never once suspecting she would pass away so unexpectedly.

Now it is I who suffer a deep sorrow. But it is a sorrow tempered with the knowledge that there was nothing left unsaid, nothing false in our relationships. My hope is that when my time comes to say farewell, I will follow her example of death with dignity and a life lived with no regrets.

An Unwanted Journey: Day 1249 – My Cousin’s Tribute to Mom

2009-04-23T11:09:00.001-04:00

As I gradually find my way back into the land of the living and make sorrow upon my mother’s death less of a constant moment-by-moment companion, I am including here a tribute from my Cousin Anita.

*****

When I was young, it was really quite simple. We lived on Strabane Ave. It was half a block to Rodney where we could hang a right. Following along Rodney, eventually we would pass our rival, Codrington Public School and, shortly after, Rodney would end on Highland Avenue which veered to the left. From there, Aunt Marg and Uncle Don lived only a few houses away. For as long as I could remember that was the way it had always been. Naively as a child, I also thought that was the way it would always be.

Aunt Marg and Uncle Don lived in what seemed to me a tiny but magical house. In the center of the home, on top of the piano was a black and white photo of five children seated like a staircase in age: Donny, Randy, Steve, Michael, and Paul. I still picture that photo in my mind whenever I need to list off my Spencer cousins. The photo gets me halfway there! Being one of only two children, I loved the commotion created by that full house of cousins. For a good number of years it seemed that there was always a baby around and another on the way. That, to me, was part of the magic.

But there was also something about my Aunt Marg, herself, that truly made visiting her a special treat. As I recall, upon occasion, she would sit down at the piano and her hands would ease their way along the keyboard in a motion of grace that few possess and what I have since come to identify as the sign of possessing a true musician’s heart. Aunt Marg always moved her hands that way with or without the keyboard and that unique movement of grace that she so abundantly possessed, enchanted my soul.

In apparent sibling adoration, my mom informed me at a very young age that Aunt Marg had beautiful auburn hair. I had never heard of that color before, but soon learned it was a shade to be coveted. At that time, Marg’s hair was thick and long. She would braid and wind it several times around her head. She also had a rich voice and a warm laugh. All of these qualities made being with my aunt something special for me.

Over the years, my mom, Catherine Pearsall, has shared with me what it meant to be the middle sister of three girls and specifically what it meant to have Marg as her older sister. What is evident to me each time my mom shares about this is that Margaret led the way. She patiently taught and brought along her younger sisters. She communicated how things were to be done. She led her sisters through the tangled web that defines the journey from childhood to womanhood and she did so with love, warmth, patience and a steadfast faith in her Lord and Saviour, Jesus the Christ. Those qualities have characterized the entirety of Marg’s life.

In her last few days, I feel she granted us all a similar gift. When she no longer could speak she continued to smile and squeeze the hand she held. She let us know without doubt that it was well with her soul. In a way uniquely Margaret she pointed us through the tangled web that defines our journey from life through death – a way marked by love, warmth, patience and steadfast faith.

An Unwanted Journey: Day 1240 – Death Seems to be Stalking

2009-04-14T14:02:00.001-04:00

I guess it’s inevitable that an unexpected and untimely death, especially of one of your parents, would lead to elevated personal anxiety levels. That death (as anxiety) is stalking me seems obvious for several reasons.

First and foremost, my coping skills aren’t working.

Take trying to be normal for example. I’m getting out of bed, walking around, sometimes getting dressed if only because the doctor or a nurse will be visiting that day. From an outsider’s viewpoint, there would be little rhyme or reason to my meandering through the rooms of my house. In fact, an observer might be justified in worrying about the state of my mental health.

And then there’s exercise recommendations. I’m trying to relax instead of simply relaxing. I’m trying to breathe deeply and calmly, consciously and without apparent effect. Neither one is working.

And then there is grieving with others who shared the same household with my mother. I invited my father and my brother to visit and, in doing so, felt good about our time together; but then a few hours later the anxiety reappeared and I had to pop a lorazepam just to gain some distance from anxiety. So I guess grieving too didn’t work.

What about writing and research? After all, they’ve always been productive exercises in the past.

During the visit, I was asked to create a written tribute for my mother for the memorial service next Saturday. After doing so, I reviewed what I had written. It felt right. The tone was what I wanted. I was honest and successful in isolating the positive, life-celebrating aspect of our relationship. But a few hours later, it’s as if I hadn’t written anything at all.

Prior to the visit, I searched out and started re-reading Nathaniel Branden’s Six Pillars of Self-Esteem, certain that I would re-discover tools to keep anxiety under lock and key. Instead, I was unable to recreate enthusiasm, finding instead a self-conscious and academic tome instead of a repertoire of life skills.

How about evasion? Maybe a movie or an engaging TV series or episode? Oasis HD is exactly that; namely, an oasis from standard TV fare on the world’s only HD nature channel. We definitely are happy to be subscribers to Oasis HD. One example is the compelling and awe-inspiring Hubble’s Canvas. Here, at least, the evasion offered is cosmic in scope, with a clear implication that life, however long or short, is blest when we become conscious of the enormity of our universe and the intricate dance of particles, heat, and distance even before the evolution of life.

Evasion is transformed into gratitude and awe, a gratitude that we are privileged to witness in movement of the stars and an awe that overwhelms death and dissolution merely by illustrating the conditions under which life evolves and itself (in the form of humanity) becomes conscious of both life and death.

It could, of course, be simply that the drugs are finally taking effect, timed to coordinate with my viewing pleasure. It could be that the time of day has paired up with the beauty of HD TV to throw a window open to the soul once more, making death and anxiety bit players on a much larger stage.

Whatever it is, I like it.

An Unwanted Journey: Day 1234 – Mom

2009-04-08T20:13:00.001-04:00

It’s one thing to prepare for your own death, to contemplate your own life and dying, to consider how your own passing might affect family, friends, colleagues, and acquaintances. It’s quite another to be brought up short by the unanticipated and untimely death of a parent.

Mom died less than 48 hours ago. She died at Royal Victoria Hospital in Barrie, Ontario quietly, surrounded by members of her family, apparently without pain and at peace. Earlier in the day, even though she was physically unable to give voice to her farewells to those gathered at her side, she was able to respond to them with squeezed hands, tears and smiles. In fact, among those of us unable to be there in Barrie, she could listen on Dad’s cell phone held to her ear. We said our goodbyes in turn and she would respond by squeezing my sister’s hand. Monday morning, that was how I said a final farewell to my mother.

As I’ve written before, on numerous visits to our home in Kitchener, Mom and I said goodbye with hugs, kisses, and spoken wishes…but all in the assumption that it would be me who passed first.

Yesterday and today, I’ve been sleep walking through a dreary world, voicing my sorrow to my sons and my wife and weeping when overwhelmed. I’ve spoken on the phone to Dad and some of my siblings either by phone or by MSN Messenger, dearly wishing I could be with them, if only for a few moments, to talk about our memories. Instead, we will have to deal with the constraints of distance and my own health concerns.

Yet again, cancer has stolen something from me – the opportunity to be with those most immediately sharing the same experience, those who dwelt in the same household with me and Mom over the years. That isn’t to say that our experiences are identical. There is the birth order phenomenon, different schools, different religious affiliations and different personalities, not to mention that among the 10 siblings, only 1 was a girl.

Nonetheless, of anyone in this world it is those of us who shared a household with her and Dad, or my aunts who shared another family household with Mom, who knew her best as a family member. Friends will know her in other ways, of course, but family is special. When we are physically present in the same room, when we glance at one another, thousands of memories come flooding back. The atmosphere is charged with those memories. If those memories were threads in a spider’s web, the strings would fill the room instantaneously.

Cancer cannot steal those memories shared with other family members from me, nor can the disease steal away those memories which Mom and I alone shared. But my cancer and her untimely death have stolen opportunities for new memories. And I resent that very much. I am bitter about that loss.

Still, in my more sanguine moments, I realize that we now have a chance to build and recreate the narratives of my Mother’s life, narratives which will help us face the future with renewed vigour and strength. My youngest brother, for instance, will be able to tell L, his daughter, all about Grandma, how she loved her family and cared for us all, how she embraced her faith and encouraged each of us to find the source of all truth, of all goodness within. He will take her example and create a foundation for not only L, but for each of his children. As will my sister with her daughter. And, if we are wise, those of us slightly older and with children slightly older will still build stories of the woman who gave everything for her children.

When we gather, there may still be moments that seem abnormally still, gaps that Mom would have filled with thoughts about distant family members, about politicians run wild, about anything that occurred to her. I’m sure there will be some smiles shared then among us, recognizing her in her absence, and then each of us jumping into the gap as if accepting her implicit challenge. If we are wise, we will use those opportunities to build narratives not only about her but about all she would want us to be.

An Unwanted Journey: Day 1231 – The Natural Order of Things

2009-04-06T00:10:00.001-04:00

My mother and father have visited me quite a bit since I was discharged in late November from hospital to home hospice/palliative care. They’ve seen my ups and downs, moments when I can hardly keep my eyes open from the fatigue or times when the pain is overwhelming, and other times when I greet them at the door, proud that I have the energy to do so.

At the end of some of those visits, Mom has often slipped me some money instructing me only to buy some telephone cards. That way, she and Dad wouldn’t worry about waking me when I should otherwise be resting. I could call them instead using the phone card. While visits are always better, the truth is that the 2-hour drive between their home and my home has been difficult during this long and cold winter. Phone cards and regular conversations minimize the distance and worries about car travel for them (I really can’t make the trip, no matter how much I would like to do so).

On a recent visit, when I was feeling especially weak and in pain, Mom whispered in my ear, as she hugged me and said good-bye, how her deepest wish was that I would recover, that God would provide a miracle, a miracle in which we would follow the natural order of things; namely, that she the parent would pre-decease me the child. In effect, she was wishing for her own death and for my life.

I get it. I’m a parent too. Like her, I would never want one of my children to die before me.

To her, I’ll always be her Donny, the first-born and eldest child. Mom has experienced the out-of-order death of a child twice before. I think anticipating a third death weighed heavy on her heart.

But life and luck sometimes continue to trip us up and kick us when we’re down.

A couple days ago, Mom fell while leaving their house to go for a ride in the car. She broke her hip, a clean break and one that would normally be amenable to a plate-and-pin mending procedure.

Things were looking good. Then today we discover that she will not be getting that surgery after all. For a variety of reasons, she will not be recovering from her fall. Instead, it appears almost certain that she will predecease me after all. Her medical team will do all they can to keep her pain free, but there isn’t much more they can do for her. She is dying.

But she is responsive. She is loved and she knows it. That is something we share with one another. Although circumstances should be different for both of us, there are two certainties, the physical certainty of death and the emotional certainty of our love for one another. Whatever the timing and however nasty and unfair it might seem, love takes away much of the sting of death’s tragic inevitability.

An Unwanted Journey: Day 1228 – Neuropathic Pain and Terror

2009-04-02T18:02:00.001-04:00

This week has been about pain, nightmares, and adjustments. Outside, the weather has switched from the bitterly cold to warm, from windy to calm, from sunny days to rain, from people walking their dogs just to get outside and enjoy the spring to the same people huddled around their television set watching American Idol or the series final of ER.

On the inside, there have been some parallels. My blood clots have aggravated some other nerves in the right leg resulting in some very difficult evenings dealing with the pain. But my pain and system management team has come to the rescue with changes to my pain medication regimen.

To summarize those changes, I’ve gone from 100 mcg/hr to 125 mcg/hr for the 72-hour fentanyl patches, from 6 mg to 8 mg dilaudid doses (after removing the pain pump at my request simply to avoid the inconvenience of carrying a pouch at my hip 24/7), maintaining the gabapentin doses of 300 mg twice a day, and adding 10 mg buscopan pills twice a day to reduce bowel spasms. Now, late Thursday afternoon, I feel like we’re making some good progress again.

But apart from dealing with pain and changes in pain management, there have been the night terrors. Not quite the same as nightmares, the terror I’ve experienced doesn’t involve any dream content. I merely jump awake, usually yelling something indicating complete and utter terror, clutching the sides of my bed and desperately calling for help.

The new or increased pain medication is probably the cause. During this week, I’ve gradually become accustomed to both the terrors and the drugs so that last night, I didn’t even have an episode. But even if I did, the realization alone that there is a causal relationship between the drugs and the terror is sufficient to mitigate the fear and restore a sense of balance.

Never a dull moment – outside or inside! But at least these days, as we enter into April showers followed by those wonderful May flowers, there is much to anticipate. Although I am receiving fewer visits these days by choice (terror and pain will do that to you), I anticipate spending time with family and friends again fairly soon. One thing I am eagerly anticipating is seeing my sister-in-law and brother-in-law freshly back from their world travels where you can board a plane one day in Japan and arrive at your destination in Canada 60 minutes earlier the same day!

An Unwanted Journey: Day 1221 – Pain, Plans, Purpose

2009-03-26T22:40:00.003-04:00

M has been after me for a while now to be explicit in my blog about the level of pain I am experiencing. From her perspective, I have a tendency to present an overly optimistic or rosy view of my current health status.

She’s probably right. So I implemented the Twitter gadget which grabs the five most recent tweets I’ve issued. I did so partially with a view to correcting the lag between palliative care events and publishing a blog entry.

The gadget has limitations insofar as it includes all tweets, not just those that one might categorize as health related. I can add tags to individual tweets, but there is nothing in the blogging gadget which allows me to filter by tags. Inevitably, then, the “last five” tweets will include some that are personal, technological or political in nature.

But even if I issue several tweets a day, I still have a tendency to censor myself about the level of pain I’m experiencing.

Today’s blog’s purpose is to state unequivocally that the honeymoon I experienced when my pain medication was balanced is now over. I’ve been sick. I’ve experienced new visceral and possibly neuropathic pain in the buttocks and right leg. I’m increasing the frequency of administration of pain killers at the same time that I had the pain pump removed for greater mobility and convenience. I’ve gone through more foggy moments in conversation, whether in person or on the phone. My one son describes it this way, “Dad’s looping again.”

It is highly likely that some new medication or dosage change will restore balance and allow me to consider going outdoors again. But my current situation has reinforced how much pain I am actually experiencing and just how much I need these medications – fentanyl, hydromorphone, gabapentin and soon, probably, buscopan.

Until we achieve that balance, planning will be done daily and will be limited to activities related to end-of-life issues. Any other time available will be my time. Reading, writing, watching TV series on DVD, visiting when I’m healthy enough to entertain visitors.

Then there are the daily things which one can plan partially, but can only be done when the right moment presents itself - talking about the purpose of life, of vocation, of life-long learning, of the pursuit of happiness and the creation of joy in the lives of others – you know, the big stuff.

So, that’s what’s happening.

An Unwanted Journey: Day 1216 – Making Madness Well

2009-03-21T15:46:00.002-04:00

Deciding upon milestones isn’t all that difficult. Birthdays, anniversaries, seasonal changes, popular culture events – these are the obvious. This week, for instance, I can say I’ve survived to see Spring 2009 and March Madness 2009.

The robins were here right on schedule, waking me up with their chirping by the 18th of the month at about 4:00 am. Since then, the goldfinches, robins, cardinals, wrens, etc. have all been entertaining me in the backyard, following their own daily schedule of appearances. I can do without the squirrels and raccoons, especially when the latter get into our garbage cans and spread their discoveries over the back yard.

This spring, on the day the robins arrived, I got M to push me in the wheelchair around the block in order to celebrate the retreat of snow and ice. One final celebration of spring was getting the crack in the foundation of our basement repaired professionally. Next week, there should finally be enough rain to test the work.

This week has included another major milestone – March Madness. After some cajoling, I agreed to set up an NCAA March Madness pool, as long as I didn’t have to find and decide upon prizes for winners. In most cases, just playing in the pool is reward enough. Right now, one of my good friends and the supplier of my books of sports journalism – D, you know who you are – has been leading the way, wracking up the points. Just you wait, my friend!

I’ve enjoyed reading John Feinstein’s books about the NCAA – The Last Amateurs: Playing for Glory and Honour in Division I College Basketball, and Last Dance: Behind the Scenes at the Final Four. At first, it’s tough keeping up with the huge cast of characters, but after a while you begin to recognize the famous players, coaches, conferences and games, all of which enrich the entertainment value of March Madness itself.

Of course, having friends, colleagues and neighbours over to watch games with me has also made a big difference. But, truth be told, watching games with friends tends to mean we chat about everything, only occasionally glimpsing the score or a fantastic dunk on the HD TV.

These two milestones - spring and basketball – have meant that I’ve done better than might have been expected in keeping the cancer monster at bay. Reading about the behind-the-scenes nonsense and honour of college basketball has reminded me about how easy it is sometimes to let integrity slip when there is money to be made. But the game itself is truly one of the best things about living in North America, watching so many fantastic athletes.

Ideally, I’d prefer that these college athletes were what the NCAA claims - student-athletes. But when you watch them interviewed on CBS, most of them can’t put a sentence together. Clearly, most power conferences in the NCAA don’t put a premium on graduating students from their athletic programmes.

When my friends and I watch these games, we will usually talk a little about the hypocrisy involved in college sports, but we’ll also be jumping up and down watching the spectacular performances of athletes who have yet to sign multi-million dollar contracts in the NBA.

Even the commercials and short documentaries can be inspiring. There was one on The Score today about great plays by NCAA basketball stars that was particularly inspiring.

In all cases - probably because we’re open to such messages from the universe – there was this sense for M and me that we’re part of a stream of life that goes on each year. There are ups and downs, births and deaths, growth and decline. We are part of it all, sometimes merely as observers and commentators, sometimes as active contributors. As Julian of Norwich said in 14th-century England: “All shall be well, and all shall be well, and all manner of things shall be well.”

An Unwanted Journey: Day 1209 – Laugh, Think, Cry

2009-03-14T15:11:00.001-04:00

“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special.”

- Jim Valvano, NCAA coach

What time of year is it? For me, it’s not spring, it’s not cracks in the foundation repair time, it’s not reading week, it’s not Lent. It’s March Madness! Don’t let anyone tell you otherwise.

Yes, I’m spending a lot of my TV viewing time already watching NCAA conference tournament games to get a sense of who the candidate men’s college basketball teams are leading up to Selection Sunday – tomorrow – the time when 65 teams are chosen to participate in the madness that begins next week and continues until the early part of April.

Last year, I ran the company pool and won with my second bracket choice of Kansas. This year, since I’m on long-term disability and spending most of my time in my medical bed receiving home hospice care, I am not involved in the corporate pool (is anyone running it this year?).

This year, although I miss my work a lot and I would like to have been part of a corporate pool enjoying a little corporate camaraderie, I am doing what I can to tell cancer to go to hell. Actually, I’m finding lots of ways to transform my unwanted journey with metastatic colorectal cancer into the mountain-top experience of my overall life journey.

Everywhere I turn, whether it’s my TV viewing, my reading, my correspondence, or my rather constrained social life, I am learning and appreciating exactly what coach Valvano discovered in his own journey with metastatic bone cancer. Laughing, thinking and crying make for a very good day.

As Charlie Crews says in What They Saw, an episode from Season One in the entertaining and sometimes enlightening TV Series Life, “Every day above ground is a good one.” But, not just because we’re alive. It’s a good day because we’ve taken the extra steps to laugh, to think, and to feel until tears prove we’ve actually touched the heart of our humanity.

An Unwanted Journey: Day 1208 – More Dramatic Lessons

2009-03-13T00:56:00.002-04:00

Coincidentally this week, my TV viewing has included shows dealing with cancer and dying. Tonight it was Grey’s Anatomy. Last night it was House.

The latter almost always demonstrates moral shortcomings in a big way. In this week’s repeat episode Sleeping Dogs Lie, a woman (Hannah) suffers acute liver failure which requires a transplant before a complete diagnosis by House and his team is possible.

The woman’s lesbian lover (Max) offers part of her liver in what appears to be a sacrificial and loving gesture. The moral quandary arises when House discovers that the woman suffering liver failure had been planning on ending her relationship with the other woman for some time. Should Hannah tell Max before accepting the transplant? Hannah doesn’t do so for fear of jeopardizing Max’s decision to go ahead with the liver transplant.

OK – there’s one moral failure. Then, as the show gets close to ending, we learn that Max had known all along of Hannah’s plan to end the relationship but went ahead with her offer of a transplant thinking that would make it impossible for Hannah to end their relationship. Moral failure number two.

On Grey’s Anatomy, in I Will Follow You Into the Dark, there are actually two story lines which deal with cancer. The first deals with two sisters and a brother dealing with a genetic form of stomach cancer. The second deals with Izzie coming to grips with her metastatic melanoma involving lesions on the brain and a prognosis of only several months, less than a 5% survival rate.

In both cases, questions about relationships are as important as any of the medical details about diagnoses and prognoses. Both nights found my wife and me discussing the importance of honesty and integrity and the maintenance of hope in the face of frightening medical statistics. What are the responsibilities of patients, family, friends, colleagues, and care-givers to one another?

I think it’s safe to pronounce unequivocally that the subterfuge of both Hannah and Max in the House episode is precisely where we don’t want to go. The show, in other words, is instructive in demonstrating what not to do.

In the Grey’s Anatomy episode, the family members dealing with proactive measures to prevent stomach cancer deals with how one balances fraternal love for one another with unnecessary pressure to conform. No answer is proposed, but the question merits much more thought.

One example might be situations of religious ideologies which propose that one’s eternal destiny is determined by decisions made before death, in which case pressuring family members to convert becomes a life and eternal death issue. How do family members deal with one another in the context of a diagnosis of cancer and a terminal prognosis?

The storyline dealing with Izzie’s prognosis is apparently more straightforward. Patients and their families must maintain hope one way or another. But the difficulty comes when we reflect on how we maintain hope. Certainly we cannot do so by maintaining ignorance.

In addition, patients need to take their time and associations seriously as they contemplate the time left to them. Sometimes it will be necessary to drop relationships in order to spend more time with those who are more loving and nurturing. No apologies necessary. Some people may be hurt in the process, but if we are told that time is short, then the company we keep is even more important to cancer patients with terminal prognoses than it is with the general public.

Is it just me, or is TV getting better these days?

An Unwanted Journey: Day 1205 - Just an update

2009-03-09T21:42:00.001-04:00

As my wife reminds me occasionally, not everyone who reads my blog regularly wants to delve into reflections on community, news stories about cancer therapies and statistics, books I'm reading or dozens of other esoteric themes. Some simply want to an answer to a simple question - "How are you doing now?"

The question is similar to how Twitter advertises itself these days - "What are you doing now?" Twitter is a service which works much like a short-and-sweet blog that answers that question with messages of 140 characters or less.

So, one way to satisfy those who want to know "how" I'm doing is to incorporate a gadget in my blog with Twitter Updates. In fact, that's what I plan on doing. I'll use my Twitter account for all kinds of things, one of which will be quick daily answers about how I'm doing and any other short messages about my medical or emotional condition.

You can see the updates in the side bar just below the section About Me. If you're a Twitter fan, there is also a hyperlink allowing you to become my follower, which means that your own Twitter account will be linked to mine thereby allowing you to access my messages on whatever application or device you choose which supports the Twitter application interface.

So what's the answer anyway?

Sleepy and a little off balance. I have to assume that my need for more naps and sleep is connected to the new breakthrough pain medication I'm taking. I've replaced my morphine with hydromorphone. At the same time, I've noticed that my balance isn't quite as good as it was before. Otherwise, there doesn't appear to be any other major change. I've had a few more nightmares, but I don't know for sure that it is related to the medication.

For whatever reason, despite the fact that my legs look a lot better these days (most of the edema is gone leaving my legs about the size they were before edema and blood clots), the itchiness and rashes continue to come and go. In fact, I will often awaken in the middle of the night only to find my hands on my legs scratching away. I've taken to wearing cotton gloves to prevent doing too much damage.

My wife and I are also talking more about memorial service planning. One day last week, on a beautiful, sunny day, she went to a local funeral home to get information and tour the facilities. Because of what we discovered, she will likely decide to have the memorial service at their facilities, followed by a reception upstairs. The services they offer are extensive and the costs quite reasonable. But it still feels odd doing this kind of planning at my age, especially when physically I'm feeling not too bad this week. Still, it's good to have some time to talk with her about these issues, to defuse some of the emotion attendant to funeral planning and to get some decisions made and set aside.

I feel mentally and emotionally stable today. I'm reading a wide variety of material, watching some good sports on TV, and enjoying favourite murder mystery series on DVD. So the world is a pleasant enough place.

For more details, stay tuned for rtfax tweets...

An Unwanted Journey: Day 1201 - Covenant Players

2009-03-05T18:45:00.001-05:00

My cousin has been part of a Christian ministry for a very long time. The ministry is different from what you might expect. It is an international repertory theatre with more than 61 units on 6 continents doing dramatic presentations in more than 10 languages.

As their web page says, "Drama is what we do." Imagine that! A ministry that tells stories, especially plays exclusively written by one man, Charles M. Tanner (he authored about 3000 plays). Performances are done in churches, schools, on the street, to military units, in prisons, etc.

The emphasis for Covenant Players is on communications, especially stories retelling the gospel by means of drama. They have been doing so since 1963.

I am intrigued with this ministry - not so much their statement of faith, which is virtually identical to many evangelical ministries - but by the medium chosen to communicate with their audience. As a former student of the origin and developmental trajectory of early Christianity, I think their chosen emphasis a wise and potentially rich one.

But in my private communications with Anita, now working in South America, it is clear to me that members of her team are just as concerned with community as they are with communications. After all, conversation occurring among people who care for and depend upon one another will naturally gravitate towards communal transformation, not just individual transformation. That's way, on a superficial level at least, the gospel of Christianity is just as much about building a fellowship as it is about individual rebirth.

In a recent reflection shared with Anita by David and Sarah Kitch, the point was made that "mountain top" experiences are enriched by sharing, by conversation, by simply being in the moment with the other person.

I relate this to my own experience dealing with cancer. The times when a care giver, a friend, a family member, or a colleague have spent time by my bedside simply giving in to the flow of conversation - those are times that come close to "mountain top" experiences. There is a healing process involved. There is something miraculous about the ebb and flow of dialog, a kind of dramatic replay of the gospel story told of Jesus and three of his closest friends on a mountain, a story commonly called the transfiguration.

Medicines cannot deliver this. Radiation, surgery, chemotherapy, hormone therapy. None of them come close.

I wish many more years of success for the Covenant Players in bringing the drama of the gospel to those in need of community. As long as the teams allow open-ended conversations to evolve naturally, I strongly suspect that all will benefit...shall we say, dramatically?

An Unwanted Journey: Day 1200 - Community, Stories, Conversations

2009-03-04T20:27:00.003-05:00

It's been close to a month since we last had a home visit from our palliative care physician. That's usually a good thing, since he would certainly have made an earlier visit should there have been any symptoms reported by me or the CCAC nurses that were worrisome. As it turned out, Monday I had decided that I would request a visit as soon as possible anyway.

It was a day of incredible fatigue. I slept most of the day and night. Each time I got up to visit the washroom, I felt the pain radiating throughout my entire body with the breakthrough pain medicine unable to alleviate it. Being the melodramatic drama queen that I am, I kept hearing in my mind T. S. Eliot's The Hollow Men:

This is the way the world ends
This is the way the worlds ends
This is the way the world ends
Not in a bang but a whimper.

If it had been just one day, then I'd say no big deal. But there have been several like it in the past couple of weeks, leading me to wonder whether the "miracle" days were over and I was experiencing just another phase of the disease process.

The stories we tell are important. They're important even if the narrative is something created on the spot and just for ourselves (such as extracting a particularly negative image from Eliot's poem). They're even more important if created in the context of community, out of continuing dialog about who we are and what our purpose is. They tend towards immortality if they have a mythic quality, say a parable repeated again and again, especially as answers to questions without definitive answers - you know, something like what Jesus did repeatedly either to defuse religious confrontation or as the only way to talk about metaphysical realities.

The cancer experience - especially in the context of the end of life - may entail healing through storytelling. Healing of the individual, healing of care givers, healing of visitors and even, occasionally, healing of many through the ripples of time and place. That kind of healing is restorative. It is all about generosity, possibility, and, oddly enough, accountability.

One example might be an extended family which makes itself accountable to ensure each member of the family does the recommended colorectal cancer screening recommended for all first-degree relatives. It might mean school children making themselves accountable for spreading information in their schools about colorectal cancer and how readily it can be prevented.

Cancer in the community provides opportunities for generosity. I've seen it many times and been the beneficiary. It also is an opportunity for the community to look at possibilities for caring for patients outside the borders of medical institutions and services.

It can also be the occasion for amplified pain and horror. As soon as the narrative of cancer includes a retributive context, pain increases needlessly. An example might be the individual patient or family members blaming themselves because of repeatedly telling themselves that they were negligent about nutrition or getting a diagnosis quickly enough. Since the story never changes, and since that narrative precludes healing, I'd have to say that it's a bad thing, a way in which the community surrounding the patient is corrupting the healing environment.

I guess what I'm saying here is that one must be constantly on guard about the stories one tells or allows to be told, about the conversations held in his or her presence. Cancer, after all, is about so much more than the disease itself.

An Unwanted Journey: Day 1196 - Yet Another Starting Point

2009-02-28T17:24:00.001-05:00

"Living better through chemistry".

It might be the slogan for any number of pharmaceutical companies these days. But, as anyone who has undergone chemotherapy can vouch, no matter how effective certain chemical cocktails might be at targeting cancer cells, the treatment itself is about consuming the right amounts of poison at the right time. The hope is that doing so will kill some cells, leaving enough of the body's self-healing resources to return the body to a healthy equilibrium afterwards.

Similarly with surgery and radiation and other current forms of treatment. The cancer is attacked brutally and with the most potent weapons currently available, leaving the healing to occur naturally.

Current cancer treatment modalities do not heal, they injure precisely and powerfully. At some point, the patient may decide that his or her quality of life has suffered too drastically, that it would be better to let the disease run its course while alleviating pain and other symptoms as best one can.

That was my decision when my chemotherapy became harder to bear than the alternative. The alternative was the prospect of my body succumbing to metastatic colorectal cancer as liver lesions grew and multiplied in other parts of the body. Presumably, the liver will become incapable of functioning, leading to death within a few days.

The decision was a gamble. Or, to be more precise, it was a matter of educated guesswork. Never having died before, I don't know exactly how much pain is involved or even whether it will be the liver that delivers the final blow. It might well be a pulmonary embolism or heart attack with an even faster end game.

So, left with few certainties except that of death (even my chemotherapy left almost no hope of "cure"), most people will drift towards hope for the miraculous. I certainly do. There isn't a day goes by in which I don't imagine the cancer disappearing mysteriously and magically. These thoughts are, ironically, most likely to occur on those days when I'm feeling my best, when the sun is shining in through the patio doors, my wife and sons and I have eaten a wonderful meal and are watching a favourite television show together, and are engaged in stimulating conversations.

When there is pain or mysterious rashes or depression, I am still reminded that I have nonetheless better quality of life than if I had continued chemotherapy. On such days, I know that I'm going to die, but I don't think about magical cures. I just hope that in dying, I am courageous, that I maintain my values in the face of pain and lost faculties, and that my wife and children will recover and prosper in my absence. Those challenges are easier to address than hope dressed up in magical cures.

Yesterday, I suggested that there are still some "first efforts" to challenge me these days.That's right! Each day that I survive is like another starting point where I can decide to do something, anything, to proclaim that I am alive and kicking. This month of February I've alluded occasionally to the healing power of community and my naive suggestion that somehow writing blogs and being part of a virtual community is a healing endeavour. The purpose of this community appears to be to collaborate with one another on issues surrounding life, death, terminal cancer, care giving, and the enjoyment of life.

It occurred to me today, in answering blog posts and other correspondence, that one worthwhile "first effort" might be to study community itself and the possible mechanisms and processes whereby community offers healing to its members. That theme offers an interesting counterpoint to themes of individual transformation I've addressed along the way in my unwanted journey.

So I'm going to do some preliminary research. In the meantime, I would suggest readers consider checking out my niece's website - edeva.ca - to see some ideas in action about building community that benefit all but focus on the contributions of women, young women in particular.

An Unwanted Journey: Day 1195 - In Our Time

2009-02-27T19:51:00.001-05:00

President Barack Obama pledged on Tuesday that the recovery plan will include funds to kick start a new effort to seek "a cure for cancer in our time." That means that of the $10 billion pledged on Feb 17 for the National Institutes of Health, about $1.26 billion will go into cancer research. The rest of the plan has yet to be revealed, but clearly the research pledge is only meant to be a "first effort".

That phrase "a good first effort" reminds me of something someone once said to me about a hand carved and painted wooden duck decoy. To be fair and accurate, the carving was a first effort. But hearing those words spoken out loud was a bit of a slap in the face. I've never gone back to carving duck decoys either because I am a true dilettante or because of a fear that a second effort would look much like a first effort, a clear indicator of my artistic mediocrity.

But today, as I lie here in my home hospice medical bed, I do hope for a miracle cure to my metastatic colorectal cancer, but I realize of course that my cancer is too far advanced already to warrant such a hope. I look at my wooden carving "first efforts", at large novels in my library still unread, at all the tasks left undone from projects in my Microsoft Outlook and PlanPlus applications that will never receive follow through. I think about all the family special events that I will miss, about weddings, births, and vacations.

When I indulge in thinking about all those things that will probably never happen, I fall into a bit of depression - not enough to merit worry, but just enough for me to realize that at this particular moment my glass is only half full. "In our time" for me means that whatever Obama and subsequent political leaders might accomplish, a cure for my cancer will not occur in my lifetime.

And then I get angry - not angry enough for anyone else to notice, but just enough to energize me into reflecting on things that I still might do "in my time" to spit into the wind, to thumb my nose at terminal cancer - to make a few more "first efforts" no matter how futile they might be according to someone else's judgements.

So what might they be? I'm thinking of buying a Folio edition of Marcel Proust's In Search of Lost Time, wait the six to eight weeks for it to arrive by mail, hoping that I can read the entire novel before the beast makes its move. Or maybe I'll get started on learning a new language, one that I can't possibly put to use conversationally while lying in my medical bed. Or maybe I'll learn to draw and then make "first-effort" portraits of people guaranteed to be either already forgotten or soon to be forgotten.

It doesn't really matter what I choose to do to express my anger. There will be days when the anger itself is transformed into something more like joie de vie or a surprised by joy experience.

Maybe I'll just keep doing what I'm doing already. Why? Because the truth is that it doesn't really matter what other people think about my first efforts or what I might accomplish in whatever time remains for me. What matters is what I think. If I am pleased with my choice, I think there's a pretty good chance that at least a few other people will appreciate it as well.

An Unwanted Journey: Day 1186 - Roseto and Me

2009-02-18T14:00:00.001-05:00

Carl Jung called it synchronicity, the concept that two or more events could occur to produce meaning even though the events were causally unrelated to one another. Believers might simply call it the Holy Spirit. Others kawinkidink.

Whatever you want to call it, it's probably safe to say that you've all experienced it, many times. In fact, you might be embarrassed to admit how many times you've thought about someone only to have that person give you call on the telephone a few moments later. Or had an idea only to find the next magazine article or book you picked up address that idea precisely.

Why embarrassed?

Because in our scientific world of cause and effect, where meaning is discovered in causation itself (two brothers toss a football in the backyard, one throwing, the other catching the first toss - a straightforward physical event with throwing and catching causally related), we become uncomfortable with the legitimacy of finding meaning in anything else (the two arrive in the backyard, coming around the corners of the house at exactly the same time, each with a football, without any prior discussion about tossing the ball around with one another for a few minutes).

In the example here, you'll notice that the meaning of the physical event of tossing the football is very different from the meaning in the intention of tossing the football with one another. The one is external, the other internal - but both clearly have meaning. One is clearly discovered by observation. The other discovered only by having the participants report their intentions to an observer.

A kawinkidink just happened to me.

My sister-in-law, and my wife and I were just discussing the notion of how my blog about cancer has created a community where all of us - author, reader, correspondent - are participating in a fairly short-term phenomenon of meaning creation. That meaning is likely to be slightly different for each of us, but its discovery and lasting impact is only possible because of the creation of this particular form of community.

In the community, we talk about death, dying, cancer, cancer treatment, ways of coping, family, friends, love, caring, religious faith and non-belief, etc. The intensity of our discussions in this community derives from the very real and probably immanent event of my demise at the hands of a persistent metastatic colorectal cancer. In other words, this virtual community isn't playing games. We're dealing with real life-and-death issues.

So then, I rearrange a few books and pick up my recently purchased copy of Malcolm Gladwell's Outliers: The Story of Success (probably because my sister-in-law had mentioned the word outliers a few moments earlier).

I read the introduction about the strange health benefits which accrued to the citizens of a small American town in Pennsylvania called Roseto. There I hear, for the first time, about the research of Stewart Wolf in his attempt to discover why those living in Roseto lived such healthy lives. Wolf demonstrated that the reason was community.

It wasn't genetics, or diet, or exercise, or even a culture brought over from their hometown of the same name in Italy. It was, instead, a consciously created community where it was common for three generations to live together in the same home. Where most people went to the same church every week. Where people stop to chat with one another as they shopped along the main street in the many individual family-run stores. Where people tend to work in the same occupations. In other words, where a special kind of community existed which inoculated the citizens against the ravages of the typical modern American diet and way of living [it's worth noting that the Roseto effect faded over time as the sense of community was lost in the melting pot of American life].

I have half-jokingly said to many people that the single most therapeutic treatment I have discovered has been my blog. But now I'm wondering if I wasn't touching on something more than merely the catharsis of writing about my experiences and then reading the occasional response to something I wrote. I wonder now whether there isn't an actual physical benefit which derives from the creation of a virtual (sometimes physical) community.

It would be a marvellous synchronicity if this were so.

An Unwanted Journey: Day 1182 - The Road Ahead

2009-02-14T17:22:00.001-05:00

There are three things that are especially important for me these days:

Finding pain relief
Finding appropriate metaphors for my journey with cancer
Sharing my discoveries with those who care

When pain is unbearable, nothing apart from pain relief matters. When pain becomes unbearable for me, I can slip into a demanding and unreasonable frame of mind.

Thankfully, I don't recall too many times when I've been totally unreasonable in my demands, but there were occasions when I don't think I "passed the test" owing to unbearable pain.

The next two concerns are obviously related to one another. Right from day 0001, I realized that I would need to find ways of speaking about cancer, both to others and to myself, that were meaningful, that made sharing my experiences in a blog format possible, and that emphasized the importance of attitude and choice. The prevailing metaphor of fighting cancer seemed to me too limiting.

The military metaphor consisted primarily of words which stressed fighting, battling, conquest and defeat. One of the reasons the military metaphor didn't work for me was because it implied that every combatant was engaged in a hopeless contest whose end result was predetermined; one might win battles, but never the war.

In addition, I had this strong suspicion that one's choice of metaphor, one's use of descriptive language, had a direct effect on one's experience. At the very least, I hoped that my experience of cancer would be one of discovery, of "healing" (not necessarily physical cure), and of revealed wisdom. I didn't want my experience to be one of despair, fear, endless frustration, and dismay. I anticipated that along the way there was an opportunity for growth and sharing insights with others.

There have been major and minor breakthroughs during my "unwanted journey". This week past, for instance, I think my wife has helped me come to terms with a tendency on my part to have unrealistic expectations about my physical condition.

I've been feeling pretty good for the past two or three weeks, so much so that I've started to revert to the military metaphor, dreaming of "fighting" cancer and "winning the battle". She has reminded me that my "journey" - especially since choosing home palliative care - has been one of pain and symptom management.

It's been about identifying pain and other symptoms related to the treatment of my metastatic colorectal cancer, applying drugs and other approaches, and then finding a balance which provides me with as much "quality of life" as is possible given the damage cancer and other treatment protocols have already inflicted on my body.

The latter approach, and the language which goes along with it, are more indicative of a journey than a battle. Even the idea of taking things minute-by-minute is more indicative of a hike in the woods, or an early morning canoe ride, or a meal with family and friends.

It has taken well over a week of reflection, visits with colleagues, friends, and family, a recurrence of pain incidents and other "reminders" that I am a case study in managing pain, not to mention a delightful change of pace in reading habits from non-fiction to novels (see Neil Gaiman's American Gods; a kind of allegorical road trip with myths and mythology seeping through the cracks in the pavement) to help me uncover just a little more wisdom about who I am, where I am, and what lies ahead on the road.

An Unwanted Journey: Day 1176 - Miracles and Unfinished Business

2009-02-08T08:33:00.002-05:00

In the comments for Day 1171, Andrea refers to "work to be done" that her father had to complete before he could move on to the next world. For those who believe, there is comfort in such reflections. A life after this one. The opportunity to "tidy up" before the final transfer from one domain to the next.

For those who believe...

One thing is certain about such reflections. They are meant to provide comfort and meaning. I honour that intent . But apart from some death bed reversal of world views (which will not happen), I cannot take comfort from such thoughts.

And so, this evening, as my wife and I watched the Raptors lose their sixth straight game, I broached the subject of "unfinished business", not because I believe the gates of heaven require a special key for me to enter that I must help forge, but because I truly do not want to leave behind a legacy of personal issues that I could have addressed but left undone.

We talked about different people with whom I have had serious conflict. Some family members have openly hoped for reconciliation. But as we discussed such possibilities, we agreed that there is nothing and nobody with whom I must make amends (in the Alcoholics Anonymous sense of the 12-step program).

My life is an open book. My character is best described as "what you see is what you get". If there are some with whom conflict remains, then they will remain - not because I am stubborn (although I am definitely that), but because self examination and reflection tell me that there is no wasted energy bound up with those historical conflicts, nor anything for which I should beg forgiveness. I am at peace, not only with myself, but with others - as much as is possible.

***

In other comments for the same day, Lorna Scott alluded to her husband and me as candidates for the miraculous. As it happened, in a telephone conversation with my parents today, we also spoke about the possibility of the miraculous. My mother is a believer who not only believes in the intrusion of the supernatural in daily life, but expects it. My father...not so much. But he did say today that he would be delighted if my improving health led to a miracle, the first that he could honestly acknowledge and welcome in his life.

Again, in my world view, the word "miraculous" doesn't work. I am far more amenable to thinking of continuing health as a positive "black swan" event (see some of my posts which talk about the impact of the highly improbable and Nicholas Taleb's work). But however we talk about it, whatever metaphors and imagery we choose to describe possible meanings for such phenomena, the point we are each making is roughly the same.

Lorna also referenced the necessity of approaching the good and the bad on a minute-by-minute basis. My wife and I also decided, in this evening's reflections, that this is truly the only viable way to approach the future. When pain threatens my equilibrium, deal with it moment by moment. When hope brightens the horizon, enjoy the gift, taking it in moment by moment. When uncertainty is dominant, reflect on the possibilities momentarily, choose a course of action, move forward, and then review as the moments for reflection arise.

***

I am grateful for all of you. As we discuss such issues, we discover jointly the wisdom that works for each of us individually. It will undoubtedly not be the same wisdom, for each of us are unique individuals. But there will be wisdom nonetheless.

There were others this week with whom I visited who also provided gifts of wisdom and sharing. You know who you are. Soup, sailing, singing. Each deserves a blog, but this is it for now...

An Unwanted Journey: Day 1171 - Period of Uncertainty

2009-02-06T15:24:00.001-05:00

It's been on my mind all week. I've been feeling better, so much so that, other things being equal, the direction of my health would lead me to believe things will continue to improve. And, in a kind of naive empirical way, that is precisely how I have been thinking about my life.

That translates into activities such as leaving the house for a visit to Chapters with my wife on Tuesday with nothing but my walker to remind me that mobility can sometimes still be a problem. I am reading again too - not just browsing book and magazine covers. Friends, when visiting, have brought over more books, more journals, and even more CDs for me to spend time with. It's been amusing actually to have my wife complain about the maze of books and magazines surrounding my bedside making access to my bedside tables that much more difficult.

The hospice care nurses have been postponing visits more frequently these days too. When everything is going well, there isn't much to do for them. Today, when one of the nurses did come for an on-site visit, she was very pleased to see that the "butter-fly" injection site was still as healthy as the day she initially set it up, over 10 days ago. She was also very pleased to see that I have been averaging only 3 bolus infusions of the "breakthrough" morphine medication every day, down from the initial 10 to 12 applications when the self-administered PDA pump was first used (in addition to the "breakthrough" morphine, I still have the "maintenance" fentanyl patch).

But for all the good news, my naive empiricism keeps wondering when the tide will turn - at which point I guess it's no longer naive. Each day, I have bouts of uncertainty about what's coming next. So when I start to nap a little more - which I've been doing the past couple days - I begin to wonder if the drowsiness is the first sign that the "good days" are coming to a close.

Or I might eavesdrop on a conversation between my wife and somebody on the phone obviously asking how I'm doing. I will hear my wife talking about her father's battle with cancer and the good days he had before his final turn for the worse. Or she might be heard saying something about "just enjoying the good days that we have". It's not just my wife, or course; other friends and family members can be heard saying similar things.

Here's the thing. I want another 30 years or so. I want the obituary to say something about dying peacefully in his sleep at age 90. But that's not going to happen. Will it?

An Unwanted Journey: Day 1164 - Football

2009-01-30T14:20:00.002-05:00

I never played football in high school or college. Football was never really on my personal radar for professional or recreational sports. Sure, I remember fondly those autumn weekends in Peterborough when I would get a call from one of my friends in college or university saying "Come on, we've got a group of about 30 guys going over to Crestwood Secondary School for a game of touch football."

Even though I was married at the time and studying at Trent University, I would almost always take the afternoon off and join my friends, especially if there was likely to be some good natured jock talk about CFL teams getting ready for the Grey Cup. The Ottawa Rough Riders were regulars for the fall classic and it didn't hurt that several of the boys in our group were originally from Ottawa.

But apart from those memories, the only times I cared about football since were when my sons played in a regional flag football league and when the Grey Cup and Super Bowl weekends rolled around.

Sunday marks the Super Bowl 43 in Tampa Bay with the Arizona Cardinals and the Pittsburgh Steelers. I plan on watching the game from the vantage point of my medical bed in the family room, although I don't know whether I'll be able to tough it out having already watched a Raptors home game against the Orlando Magic at noon.

If there is any professional sports game that can lay claim to best representing the American spirit, it is football. A recent book, How Football Explains America, was reviewed recently by Jeffrey Marlett in an article Gridiron Nation in First Things: The Journal of Religion, Culture, and Public Life. If there is a sport which both appeals to and repels (its super patriotism and full-blown militarism) me at the same time it is football.

Part of the attraction of football is that it imparts lessons. I received notice today from Carnegie Mellon University of another video being released of Randy Pausch talking about lessons learned for life from football. Randy is, as you recall, the inspirational person who died just this summer from complications in his fight with pancreatic cancer. His book and video have been very inspirational for me as I deal with my unwanted journey. The newest excerpt is embedded in this blog.

There is nothing specific to lessons learned in the fight against cancer in this video extract. These are general life lessons. But as Randy says, when there is an elephant in the room (namely, cancer), you really should introduce the elephant first. In addition, I find that part of the reason that I have an elevated interest in life lessons these days is precisely because I have cancer and because my prognosis is short. There is an elephant in my room and he seems pretty big.

An Unwanted Journey: Day 1161 - Cancer and the Improbable

2009-01-27T12:07:00.002-05:00

One of my friends asked me yesterday how frequently Avastin treatments resulted in severely damaging consequences for MCRC (metastatic colorectal cancer) patients. I don't know the precise measure, just that statistically the percentage is very, very low.

Statistics.

Again we're back to an interesting phenomenon. The percentage of those receiving Avastin with toxic results is low. But for me personally, those statistics don't matter at all. You might say that even though terrible toxic results were highly improbable for the general population, for me they were almost absolute (100%).

But my question today is this. If highly improbable, and very damaging, events can occur for me personally, making my journey with cancer even deadlier, why can't improbable events occur at a personal level which twist the road towards happier, healthier destinations?

I'm not saying that I should ignore evidence and simply wish on a star. But I am saying that "black swan" events do occur, have already occurred in my own journey, and may well occur again. Why not consider the possibility that the results will be positive? In other words, if I'm feeling stronger and healthier these days, is it too much of a stretch to wonder if this might continue?

My friend (whose father died of colorectal cancer) often asks how I'm feeling. What he means is, apart from the medical test results and measures, how is my appetite, my energy levels, my interest and enthusiasm for life? If my answers to those questions are generally favourable, then act accordingly.

When you blend such folk wisdom with what we are learning these days about the impact of the highly improbable, there may be reason for me personally to celebrate. I don't know what tomorrow may bring, but today the sun is shining, the coffee tastes good, the book I'm reading is insightful and thought-provoking, and my wife has just come in the front door ready for a hug and a kiss - a good day.

An Unwanted Journey: Day 1159 Part 2 - Suckin' it Up

2009-01-25T20:06:00.001-05:00

One of the side-effects of gabapentin is loss of mental clarity, exactly the kind of thing that happened to me as we attempted to deal with one of my pain issues, neuropathic pain. At the time it was happening, I lamely called it spasms.

Later, in discussion with the doctor, I discovered that the professionals had a more precise term for what I was describing - pain incidents. What was happening was an instantaneous onset of intense pain in specific parts of the body. In my case, it was across the top of the legs and would last anywhere from 2 to 20 seconds. It was so intense that morphine and other pain killers had absolutely no effect. The only recompense when experiencing the pain incident was the realization that the pain would dissipate in a reasonably short period of time, even though it might well return within a few seconds in an even more intense form.

When we started to treat this kind of pain with gabapentin, we started with one pill in the morning, adding another in the evening, and then finally adding a third pill around midday. By the time we had added the third pill, I was demonstrating the loss of mental clarity which prevented me from writing coherent blog entries. I was also saying and doing things which were uncharacteristic. We cut back on the midday pill. Since then I have gradually regained some clarity and coherency in speech and writing while keeping the pain incidents at bay. A decent trade off, I think.

But today, I realized that much of the "good" I was experiencing in finding a balanced pain management plan through appropriate dosages of morphine, fentanyl, and gabapentin was "purchased" at the price of a delusion; namely, that I was getting better.

Early this morning, I talked to my wife about possibly going to church. I wanted to see friends and visit with those who had been so kind in visiting me in hospital, at home, in sending email, and in bringing food and other goodies to the house. But as she reviewed with me exactly what the implications were of trying to get dressed, get into the car, remain seated for 90 minutes or so, get downstairs to the washroom if necessary (not to mention that any facilities wouldn't be appropriate for somebody in my condition) and then visit for awhile, the dream of being better began to fall apart.

I talked then about going to the movies. Better, but still unlikely. There would still be stairs, narrow seats restricting my massive edemic thighs and the length of time required to stay in one place.

Finally, we discussed the possibility of using a cane to get inside a Starbucks to pick up a coffee, possibly even sitting down in a chair for a few minutes.

By then I was realizing just how simplistic I had been. I crawled back into the medical bed feeling the pain in just about every part of my body, letting the tears flow as the reality of my situation washed over me.

Yes, I was a little stronger. Yes, I could use the cane and walker around the house a little better than before. The pain was largely under control. But I was still restricted to the family room and a couple other rooms in the house. I can't bend over even to start pulling on my socks. Anything I drop to the floor, I can't pick up. I can't clean up after myself adequately.

Basically, I'm an invalid who sometimes pretends to be otherwise. My computer gives me some freedom and ability which I greatly treasure, but if the power adapter cable comes loose, I can't even reach to pick it up from the floor.

I'm tired of pretending it's otherwise. I know it's important to remain optimistic, to hold on to milestones, to celebrate new life and simple pleasures. I'll try to do that, I honestly will; but sometimes I just have to see things the way they are, whatever emotional pain that might entail.

An Unwanted Journey: Day 1159 - Hugs and Hot Soup

2009-01-25T04:51:00.001-05:00

Pain management is a lot like creating a recipe which you know in advance has to change regularly. Today, for instance, the recipe includes a ratio-Fentanyl transdermal patch which administers the drug continuously at a rate of 100 mcg/h. In addition to that, there is an optional "breakthrough" morphine, delivered in bolus infusions at a rate of 30 mg/ml (15 mg) per 60 minute maximum by means of a PDA pump administered directly by the patient "on-demand".

In addition, I have been prescribed gabapentin to deal with neuropathic pain, most of which we assume is generated by the degeneration of nerves brought about by blood clots in the legs.

Every day, I meet with a member of my pain management team so that we can review side-effects of the "recipe", the "butterfly" sub-cutaneous injection point, the PDA pump being used, the amount of "breakthrough" morphine being used in the previous 24-hour period, and so on. In addition, we review my sleep patterns, bowel functioning, appetite, urinary functioning and anything else that has arisen as an "issue" during the past 24 hours.

For example, we continue to monitor late afternoon and evening spikes in body temperature. Currently, my wife and I are able to deal with these spikes using cool cloths, removing clothing and bedding, sipping ice water and popsicles, drinking lots of water and cool fluids, and then finally relenting to the use of Tylenol when all else fails. In all cases thus far, the temperature will decline to a reasonable measure by bedtime.

What all this illustrates is that the recipe changes regularly, sometimes as frequently as every 24 hours (if you include the optional bolus infusions of morphine, then every hour).

But when the recipe is in good order, and the side effects are minimal, the work of the team declines to a quick daily monitoring which can often be conducted over the phone via a quick conversation with the nurse. At that point, other recipes take centre stage.

One of the nurses who works at our regional cancer centre's oncology unit in the hospital is a friend who we have known for many years. She is the master of what she calls the "hot soup and hugs" treatment plan. A couple days ago, she came to our house to deliver the treatment - home-made hot soup, bread, and hugs for all. From years of experience, she is convinced that the hot soup and hugs treatment plan is effective. I have to agree.

Another very good friend dropped by with a turkey pie from the Stone Crock in St. Jacob's and some muffins for our sons. Again, his recipe is a simple one - a little food and an excuse to share war stories about our various ailments. In a way, his recipe is about guy hugs.

What all these recipe stories illustrate is just how much the cancer patient needs both the professional and the personal, the medicines and the hugs, the prescriptions and the conversations. We need both and I wouldn't want to be the one who had to decide between the two.

An Unwanted Journey: Day 1158 - Milestones and Circles

2009-01-24T20:20:00.001-05:00

Top photo is of "J", half-brother to our sons born just a few days ago.

Bottom photo is of "L", cousin to our sons born to my brother and his wife just a few days ago.

***

I'm curious about how exactly the end of life looks for someone with metastatic colorectal cancer.

But as my home hospice care companion and I talked about it yesterday, I realized that the last few days, hours, and moments probably look quite similar to many other scenarios where the patient has a balanced pain and symptom plan.

Lots of sleeping, interspersed with wakeful moments when family and friends are gathered around the bed reminiscing about the good times. Hand holding and hand squeezing, hugs when possible, kisses and free expression of compassion.

All of this is comforting.

What really matters then, after pain management is truly balanced, is struggling to survive, even if only to squeeze in one more family or social milestone. My son, for instance, celebrated his 20th birthday yesterday. That was a milestone I didn't want to miss. And there are others on the horizon.

M. asked me today what the next milestone should be. Our wedding anniversary is coming in early May. That might be a bit of a stretch. On good days, it seems entirely probable that I'll reach it. On bad days, getting to the start of March "madness" seems far more reasonable.

Milestones will always be subjective markers. There's no use arguing about them. But they do have value of motivating oneself to retain health and fitness as much as possible.

In addition to milestones, there are the fortuitous circle of life symbols which can be very motivating for the surviving cancer patient. The two photographs above are great examples of this. Our extended family was blessed recently with the birth of a boy and a girl, reminders that whatever happens with my generation, life will go on.

This too is very comforting.

An Unwanted Journey: Day 1152 - Mobility and Strength

2009-01-18T11:37:00.001-05:00

We chose home palliative care because of one thing - quality of life.

When I was still in hospital recovering from a series of serious medical problems issuing from chemotherapy treatments, it became apparent to all of my medical team that my quality of life was quickly reaching a critical low point. Both legs had extreme edema, one with life-threatening blood clots. And that was just the beginning of a litany of problems, none of which were direct results of the metastatic colorectal cancer with which I had been diagnosed. Instead, they were results of treatment, not the disease. Quality of life had become a farce.

If somehow I had known what the future would bring by starting treatment with Avastin, I would obviously have opted to avoid chemotherapy completely. I would be mobile and in relatively good health. Yes, I would still have to face growth of the lesions in the liver and in the abdominal walls. But that would take time, and there were - at the time - no symptoms causing immediate health problems.

Given what would have been good mobility, strength, clarity of thought, etc, there would have been more choices available to me.

I might have considered continuing my career. Or I might have considered building my physical conditioning. I might have considered a kind of semi-retirement with time for travel. I might have ...

But here we are.

I am struggling daily with physical pain, mobility and strength. But I am making some progress while the disease continues its inevitable march towards something from which I can never recover. The way I look at it, though, is that any and all progress is worth celebrating.

Progress is about quality of life - mobility, strength, personal choice and control over bodily functions. Last week, here's what I achieved:

walking in small areas around the house with the use of the walker or the cane
less use of break-through pain killers (better management and control)
clean up under my own strength and out-of-bed for standard things like washing up, brushing my teeth, flossing, etc.
negotiated non-pharmacological approach to some pain management by committing to more physical movement and "exercise" thereby reducing the dosage of maintenance drugs

These are items for celebration.

Finally, I'd like to reassert our gratitude to family, friends, colleagues, correspondents, etc. who continue to express their support for us through calls, emails, and personal visits (call first!).

An Unwanted Journey: Day 1145 - Establishing Stability

2009-01-11T09:30:00.001-05:00

I'm OK physically, mentally, emotionally, socially, and spiritually these days - although I hasten to emphasize that being OK is a struggle. Struggling with the world of pain and symptom management and home palliative care (including fever control, rashes, symptoms from the edema and leg clots) has been and continues to be far more complex than I ever anticipated.

Bio-chemically, my world is complex, fragile, fast and furious - much like your own - although with me and my team members paying much more attention daily to both objective (e.g. blood work, urine and stool samples) and subjective measures (e.g. pain scales, quality of life estimates).

Finally, organizationally, it seems I'm part of even more networks and teams than ever before, some of them merely virtual, but ready to be activated quickly (e.g. institutional hospice care).

So a lot has changed.

What hasn't changed is that M remains my lifeline to a larger social reality (hmm - Santa hats with flashing lights? - I wonder just how mentally stable that reality is?), although the landscape upon which I construct my reality has shifts slightly larger than what she would normally accept - hence, negotiation!

I sometimes try to argue with her that as a I drift from one state of consciousness to another, she should observe me carefully, as those are likely candidates for occasions when I will become particularly brilliant. Most of the world's problems seem amenable to solution to me during those states; it's just that I can't remember what the solution was afterwards.

At a lower level, even the non-sequiturs and one-liners I generate when drifting towards other states of consciousness are at least candidates for Saturday Night Live or a improv show. She didn't buy it. Clearly, I was just coming out of a drug-induced stupor.

The stupor makes the stupid guy write and say stupid things. That's her story and she's sticking it to it.

The morphine dosages will increase. As they do so, writing becomes even more difficult for me. I recognize the loss of mental capacity as I take longer and longer to find something I once had at my fingertips or to edit something that required only a few minutes of coffee and a metaphorical slap across the face.

OK - not as easy to do as it was before the drugs. That recognition is particularly distressing for me, not knowing whether or even if, some of that mental capacity will return.

An Unwanted Journey: Day 1132 - Creativity and Confusion

2008-12-29T12:47:00.001-05:00

Maybe stating the obvious will help me get back into writing regular blog entries.

Publishing personal blog entries depends on personal energy levels, which in turn depends absolutely on my mix of pain medication drugs.

One day, the mix leaves me sleeping or too sleepy to compose coherently. While I was still in hospital, I would still find 5 minutes somewhere to edit my material. That was usually enough. Now, it's not even close. In other words, editing is by far the most time consuming part of publishing my blog entries (the few there are). Unfortunately, research and creative writing remain my favourite activities in writing blogs.

This all means that I can no longer trust myself. I will regularly have to request my sons or wife to check each entry to see if they think it is legible, not to mention interesting.

Sorry for the delays....

An Unwanted Journey: Day 1121 - Tuning

2008-12-18T17:10:00.001-05:00

If you've ever played a stringed instrument, then you'll know that tuning the strings quickly becomes one of your definitive and habitual exercises. From the time I picked up my first 4-string bass guitar, through the years of beautiful symphonic sound on a 12-string acoustic guitar, and than back again to the relative simplicity of finger-style guitar picking on a 6-string-acoustic guitar, the discipline of stringing and tuning my acoustic guitars has been a constant reminder that nothing beautiful can possibly be heard without the tedium of correcting for slightly out-of-tune strings.

Everyone develops their own tolerances. And those tolerances are rarely discerned by anyone other than the small fraternity of acoustic guitarists with virtually identical musical interests and practice regimens. It's just as true for electric versions, of course, but there's something pure and unadulterated when done with the simplest of tools and no additional electronic tuners available.

Cancer care in a home setting has some similarities. The regimen appears strange from the outside looking in. Gathering of tools (often the simpler the better - such as a spiral bound 360 Fat Book log), setting up columns and daily question matrices, scanning the carryall basket for medications, ensuring towels, cleaning products, etc are readily available. Simple pre-planning efforts which set the stage for a day when either you or the disease seems in control.

Sometimes it seems like the simplicity of scanning your setting is about indulgence. The clock has to in exactly the right place, the thermometer right where you would expect it even with eyes wide shut. I don't know why, but somehow part of my pre-planning now involves ensuring the HD-TV controllers are lined up and ready to roll so that CNN in HD has become a necessity before I begin swallowing daily pills.

But then there are other days like today when no matter how close my ideal and actual settings were to one another, I still felt out of control. We identified it later in the day as a minor panic attack. In my case, such attacks are related to a sense of asphyxiation. Clearly, my surroundings have not been set up to induce such feelings, so when they do occur, I have to make adjustments, something as simple as opening the patio doors to a world of bitter cold temperatures and and winds that feel like they just came off the corner of Portage and Main in Winnipeg.

I'm continuing to tune. I'll probably be less diligent about responding to personal email requests (especially if I've covered off the gist of the request already in another blog entry) in the hopes that I can get back on track with regular blog posts. Even then, if it's obvious that I'm not writing what I meant to write, I'll turn to M. for editorial advice, thereby delaying posting an entry even longer. As I continue to deal with pain medication balancing acts, sometimes all I'll get to accomplish in a specific day is to get cleaned up and find just enough awake time to sleeping time.

This is all new territory to me right now. Be patient with me and I'll endeavour to communicate what it feels like from my perspective.

An Unwanted Journey: Day 1115 - Nostrils above the water line

2008-12-12T21:44:00.001-05:00

I've had quite a few personal inquiries about my health this month. It's simply not characteristic for me to have written so little. You can sometimes infer problems from brevity or infrequency, from excessive use of parenthetical expressions, and occasional over-reliance on pictures or vain attempts at humour.

So, I've waited patiently for energy to return only to discover that I required a blood transfusion (my hemoglobin having fallen from 97 to 77 since leaving hospital for home care). I've turned away visitors in the hope that regaining my flagging energy had an inverse relationship with the number of people I saw face-to-face each day. There is a relationship, of course, but nothing so simple as a direct inverse correlation.

Trying to find an appropriate balance of baseline and break-through medication as well as deal with the additional muscle spasm pain has meant becoming totally obsessed with numbers, intervals, and responding to slight variations in my 0-10 pain scale throughout all my waking moments. In addition, it became overwhelmingly obvious that I was no longer able to hold apart the barriers between my own private world of thoughts, reflections and outright dreaming from conversations and behaviour acceptable in the "real world". [I don't know how many times I'd catch myself watching my wife and sons trying to figure out if something I just said or did was a prelude to a hallucination, a full-blown hallucination, or an "aha" moment in which they had just been privileged participants to the world of genius that is Don Spencer.]

So I will simply bring that material back into the public arena as I can and let you judge for yourself.

In the past week, I've had a full-day at the Grand River Regional Cancer Cancer for a blood transfusion. I've been learning more about morphine and some of the other pain medications available. For now, we'll stick with what appears to be working; namely 10-mg dosages of morphine administered as the break-through medicine. This means, all other things being equal, that I'm actually taking less morphine than earlier in my treatment. The baseline is fentanyl 50-mg dosages administered over 72 hours. The spasms I'm deal with by shifting my body position and realizing that they won't last long.

When the pain is under control, I'm watching more great HD-TV shows with my wife, tracking how the Raptors respond to their new coach, using the wheel chair to navigate around the house, and visiting for short periods with friends.

Thank you to all who have kept in regular contact as I struggle with pain. You can probably expect fewer posts in the immediate future as we get the basic daily routine perfected. But there's nothing preventing you from offering your own ideas and reflections!

An Unwanted Journey: Day 1109 - Visits as Artifacts

2008-12-06T18:47:00.001-05:00

Using the term artifacts was a conscious decision in the early 1980s by some colleagues and me when we started up a part-time business. We wanted to create and distribute software to museums, galleries and archives which improved their effectiveness in documenting collections, and sharing that information with other publicly funded institutions.

One of the key terms at the time in federally funded museums across Canada was "material culture". Material culture was anything physical that survived over time and provided material cultural historians with objects for study. The idea was simply that historians tended to use surviving texts, got paid reasonably good money, and taught in universities. Material culture historians tended to have at their disposal objects made or modified by human culture and then recovered during archeological endeavours. These historians got paid poorly, if at all, and taught tour guides. The word artifacts was part of a clear trend among such poorly paid "professionals" to regularize and normalize what they did.

I had already taken a leave from doctoral studies in Canadian medical history at the University of Waterloo. One of the trends I monitored was something called Public History, the practice of history outside the academy. Examples of pubic history practitioners included educational consultants, museum curators, historic site interpreters, and authors of historical fiction.

When friends, family, and colleagues visit me these days, I sometimes feel like I am engaging in Public History with a specialization in out-patient palliative care treatment for patients dealing with metastatic colorectal cancer. Since our visits don't consistently generate artifacts, thinking this way is a bit of a stretch. If I blog about a visit, then the blog itself becomes a "virtualized" piece of material culture.

In fact, this blog is a truly a kind of Public History whose value becomes greater the more people there are who take similar initiatives.

I know...it seems the connections and implications I want to see from blogging become more tenuous with each passing day. But if the blogosphere is opening up communications channels, increasing frequency of communication, and providing a 24/7 online resource for others interested in this artifact, then I'll grudgingly accept the previous criticism.

As for the visits of just the last couple days themselves...

Mom and Dad - always good to see them and get/give the requisite hugs and kisses.

M.S. from work - a great colleague whose wit and wisdom I truly miss daily.

C.D. and B.M. - an introduction, some reflections on assets based loans and the various financial crises in the United States, and catch up on family events and functions.

The best of the best is, of course, catch up.

An Unwanted Journey: Day 1107 - Warning: Genius at Work!

2008-12-04T11:55:00.001-05:00

...Thursday morning...

"So, what are you going to write about today?"

"I have no idea."

"Well, then, maybe it's time for another break."

"Maybe, but sometime's when I have absolutely no idea what I'll write about, that's precisely when a great idea or reflection appears."

...later Thursday after a long visit with Mom and Dad...

"So, did you figure out what you're writing about? After all, you appear to be nodding off to sleep. Your hands are already slipping off the keyboard."

"I need a few minutes shuteye..."

...late Friday morning...

Zzzzz. Phone rings and the nurse arrives. The sun is shining through the patio doors, across my thighs, and adding additional warmth to the sheets on the medical bed through the patio doors.

What was that about yesterday's blog?

An Unwanted Journey: Day 1106 - Doing Drugs

2008-12-03T11:39:00.003-05:00

The word on the street is that I'm having problems dealing with the opiates coming my way these days.

I've never been a user of opiate-based drugs, either for pleasure or pain, apart from those bleary weeks of April 2006 when pulmonary embolii threatened everything. The difference between now and then is that I seem to be having more problems and fewer benefits.

True, it's been a bum wrap for opiates over the years, since the only patients deemed sufficiently coherent to express gratitude have since "left the building". I'll want to get right back to this business of coherence momentarily, but for now let's briefly talk about the other kinds of problems associated with opiates.

Doing drugs doesn't symbolize a mechanical or mathematical problem for me.

I can find the painkillers I need. I can store them and keep them dried and protected. I can even tweak the administration schedule on my Pocket PC (HTC 6800) with alerts in Pocket Informant waking me at just the right time. I can figure out the dosages required for both baseline and break-through medications ahead of time.

So for the most part, the mathematical and mechanical issues are under control - with one exception. I can't seem to get Windows Mobile 6 synchronizing accurately with Windows Vista Ultimate. But that I'm even having the problem means I'm part of a small technical elite. It doesn't set the stage for appropriate sympathy.

What should garner some sympathy is that I have terminal metastatic colorectal cancer with a prognosis of "weeks, maybe small months" (whatever that means in common speech). Even so, I have been the beneficiary of an extraordinary number of email, phone calls, and visits whose intent was simply to express love and affection. I find this all very touching.

But I am having difficulties documenting what I am doing, thinking, and creating coherently and consistently. If you haven't already noticed, I'm fatigued and in a state of confusion when writing that simply wasn't there before.

My work life has been about analysis, discovery, creating optional solution scenarios, proposals, clarity, and communication.

Now I feel those skills and attributes slipping away.

***

Originally, this post was going to explain why a blog entry hasn't made it to the publishing stage recently. There were lots of funny stories I was going to share, stories that had all four of us here at home laughing out loud at my expense. And I didn't mind it at all. Laughter truly is healing.

But now it's beyond being funny. At this moment, I am completely exhausted with the effort of writing. I'll be back as soon as I can. See you then.

An Unwanted Journey: Day 1102 - Goals

2008-11-29T23:50:00.000-05:00

Category	Goal (measurable)	Progress (%)	Lesson
Voiding	2 litres (minimum)	94.25 % 1885 ml	As close as I can get to the baseline, realistically.
Blog	An Unwanted Journey: Day 1102 - Spirituality (#5)	100%	Good to get this put to bed; D., I hope this answers most of your questions. R., no drama involved. Agnostic and atheist are not as accurate terms as non-theist. There will be no "death-bed" conversions!
Walker	20 steps out-and-back using only the walker and a backup cane for balance.	150% 30 steps out-and-back physical path.	I'm regaining strength in my legs, and the pain isn't overwhelming. Still concerned about DVT and PE.
Visits and Calls	No in-house visits. As many phone calls as necessary.	100%	No family/friends today in person; some good phone conversations.
Cabin Fever	Admit to issues; discussion of communication steps.	100%	Daily work inevitable. Toastmasters strategy works - "tell 'em what you're going to tell 'em; tell 'em; tell 'em what you told 'em.

An Unwanted Journey: Day 1102 - Spirituality (#5)

2008-11-29T15:33:00.005-05:00

This will be the last post in the sub-thread on spirituality. Although I could easily write another several dozen entries, I don't want this blog to be consumed any further with this topic, for reasons which should become evident below.

I think it was 1982. There were 4 couples gathered around a dinner table in a building that has since been razed on the University of Waterloo Campus. Each of the graduate students in the group had been working with a history professor in the graduate program who "specialized" in mentoring students from evangelical backgrounds through the treacherous waters of secular graduate studies. With some students, he was successful. With others, the result was what he would term an unmitigated failure. All of those at the table were "failures".

"So, Don, do you remember when you first began to doubt?" someone asked. It was a clear allusion to the testimonial type meetings often found midweek in Baptist and Pentecostal prayer services. Individuals were encouraged to relate how they first came to give their hearts ("and minds") to Jesus. Any further changes were, by implication, insignificant. No personal evolutionary development in spiritual thought was considered possible.

It was conversion only that was the reigning metaphor. Convert one way, and the keys of heaven were yours. Convert another way, and they would unceremoniously be ripped from your hands, indicating the worst of all possible sinners - someone who held the truth and then surrendered it willingly, wilfully.

The table erupted in laughter, with everyone else in the room clearly wondering what was so funny about the mystical Anabaptists, or the stern and "oh-so-assured" Calvinists and Zwinglians, or - my speciality - the tightly knit, mild mannered, proto-Fellowship-Baptists of a group led by Pilgram Marpeck in cities of southern Germany, Austria, and Switzerland.

Don't laugh! I could easily have made a very comfortable living teaching Radical Reformation studies in many university campuses across North America and Europe.

This story is meant to illustrate what it was the led me away from evangelical Christianity to where I am today. I will go into no further details. Each milestone has been part of a journey of development, a journey whose itinerary has given me wealth beyond measure.

It included, among other things, a decision to let questions of morality and ethics dictate my spiritual interests. Issues like the limited roles of women in the church, the fear factor used so brutally in the fight against rights for gays, lesbians, bisexuals and transgendered persons.

It included a refusal of the notion of the infallibility of scripture. Historically, one cannot deny the failure of Christianity, especially when dogma trumped praxis by means of proclamations of the infallibility of person or dogma or text - slavery, racism, and other 'isms throughout church history. Crises in the history of Christian religion and spirituality are often linked with surrendering logic and reason to revelation. When revealed truth is seen as limited and symbolic (the finger pointing at the moon is clearly not the moon), then I have no problems with most religious thought and practice.

It also included a realignment with modern evolutionary thought. Darwin loves you every bit as much as Jesus does.

***

So to conclude...

It wasn't about an emotional event, some kind of personal betrayal, failure, or conflict between ideal and actual. There were plenty of those, naturally, but they didn't determine my world view.

There were many milestones in the last 36 years, each of which was truly significant to me. My response, as it is with cancer, was further study, open dialog with others, and an inflexible demand that no matter how many mistakes each of us may make along this road, hindsight should never be confused with foresight.

Mistakes? I have made an incredible number of mistakes. But overall, when I hold up my evolving thoughts about spirituality and religion, and compare them with my responses to cancer, I feel pride. In either case, I claim nothing more than an attempt to find truth, to give words a chance, to tell stories, and to find peace wherever it might be hiding.

An Unwanted Journey: Day 1101 - Goals

2008-11-28T23:30:00.001-05:00

Category	Goal (measurable)	Progress (%)	Lesson
Voiding	2 litres (minimum)	100 2250 ml	2 litres a day has got to mean something about getting excess bodily fluids out
ROHO Insert	get components from Medigas setup and tested	100	every little bit helps when it comes to reducing pain; this insert is definitely more comfortable
Blog	Spirituality sub-thread #4 re friendship	100	Most people are smart enough to wear more than one hat at a time; give them the benefit of the doubt
Wheelchair	Into the living room, family room etc.	100	I'll have to alternate walker and wheelchair challenges
Visits	Limit to 1 visit, 2 people	100	Great visit with 2 colleagues at the same time in the early afternoon; too many phone calls throughout the day made it seem like visitation wasn't under control, as did dealing with the opiates for pain medication

An Unwanted Journey: Day 1101 - Spirituality (#4)

2008-11-28T07:48:00.005-05:00

R. is 4 years older than me. K. and M. are respectively 1 year older than me. So I'm truly the baby in the group. Given the anti-intellectualism of much that passes as Pentecostal these days, it's a little unexpected that at least the two of us prided ourselves on having skipped a grade in elementary school. Each of us had deep connections with each other and many conversations that would last hours parked just outside our respective homes talking about how we were going to make a difference, how our own brand of Pentecostalism would mould the world into a far better place.

Those conversations were spiced occasionally with casual asides about how T.'s breasts were truly spectacular, about how idiotic some of G.'s rabid anti-intellectual sermons were, about practical jokes we would plan on the church's ushers, custodians and assorted leaders (there were some that we would never undermine because their personal integrity was beyond reproach or doubt).

R.'s recollection of precise details of who said what when and where made it like having our own internal group historian. To this day, I think that even when he's making it up, it sounds like so much fun that it absolutely must have happened that way.

K. provided the glue of deep and abiding loyalty and respect for each of us. It was a fine group indeed, a very fine group.

If my Mother and Father were a strange couple, then our foursome was just as strange. Looking and listening to the 4 of us yesterday in my family room, you'd have to wonder what keeps such disparate characters together.

If friendship provided a means for me to change, to become more driven by positive ideals, and to separate myself from the constraints and restrictions of standard Barrie life and thought, it also preserved me through times of betrayal, the gradual death and dying of my personal Pentecostal perspective, and to adapt my overall Christian perspective to university life, reflection and serious attacks on other friendships. In other words, for some other people, the experiences I had in the Pentecostal Assemblies of Canada should have been enough to drive me away in utter cynicism without so much as a casual passing interest in those whose paths kept them ensconced at Hi-Way.

Having said that, I still cringe at the unreality of dogma which asserts that what makes Pentecostals distinct from evangelical Baptists is the former's belief that the initial physical evidence of being baptized in the Holy Spirit is the vocalization of sounds that are supposed to be tongues of men and angels. It's equivalent to a Baptist demanding one adhere to an assertion that the first physical evidence of being baptized by water is that your clothes get wet very quickly. Well, duh!

By now in this sub-thread you should be getting the message that the content of dogmatic religion is never really as important as those on the inside claim it is. In fact, the content is often completely off the wall and involves blind adherence to facts and theorems. While on the inside, the content is about revelatory truth. It demands that you do not examine critically the fundamentals because once you do, you'll realize all you've got is someone else's assertions about reality that were revealed to them by some authority beyond question. Where the buck stops isn't really the problem. It stops somewhere, and you simply have to bite your lip and accept the fact that you've surrendered part of your personal integrity to someone else, assuming you want the affiliation with the religious group to continue. With ultimate concerns, where and how you decide to surrender your personal integrity is extremely significant.

An Unwanted Journey: Day 1100 - A Voiding Christmas

2008-11-27T23:57:00.002-05:00

Christmas came early this year. Today, in the early afternoon, I had my wife and two sons with me in the family room watching the guys enjoy some new Playstation 3 games being played on the HD-TV big-screen. Memories of similar occasions all the way back to the early Nintendo years came flooding back alongside these fantastic images of the most recent incarnations of those games.

Another time, 3 childhood friends were sharing themselves, their values, their memories, and their affection for me. As we said our farewells and I watched them get back into the stretch limousine for the trip back to the Hamilton airport (an item crossed off one of my friend's personal Bucket List), we all realized the possibility that this would be the last time all of us would visit with one another. It was perfect - sadness and joy inextricably linked in recollections of 4 "seniors" enjoying their childhood and youth all over again.

Shortly after that, the doorbell rang and in walked my youngest brother, after having just arrived at Toronto Pearson International Airport and bringing his more modest Ford rental along the 401. My brother is a Canadian through and through, preferring Tim Horton's coffee (which he picked up on the way here), while I preferred the French Press Starbucks bold variety offered by another friend in a gift box brought to me during a visit from earlier in the week.

Part of why my brother is visiting is to get stories, stories of years and occasions when his memories are minimal or non-existent. Always happy to oblige with stories about M., and me, about my grandparents, about my uncles and aunts, about childhood friends and neighbours, I think we got his American Thanksgiving weekend off a very good start.

Time is too short these days to make avoidance a habit. So there were also moments when I played the role of facilitator, attempting to ensure that important questions were asked and reasonable answers provided. In the actual meetings/visits, I could sense the success of doing so, the sense that full frontal nudity may be appropriate right now. At other times, depending almost exclusively on email, it was far less evident to me that holes in the walls were being plugged and that communication had been improved. We'll know soon enough, I suspect.

Always and within a few moments, the health questions would come my way. How long did I have to live? What could they do to help my family with funeral/life celebration arrangements, etc? What about some few remaining/outstanding quarrels? Was I really going to finish the blog sub-thread on spirituality? Would I consider doing some audio recollections for younger siblings who simply weren't around for some of the earlier Spencer family events?

And invariably, as we talked about health and death, the issue of voiding and catheters would arise. People my age don't need a lot of time or sense of security to wax eloquent about the pain of being unable to empty their bladders. I have to say that one of the most positive developments in my health saga recently has been my spectacular success in regaining natural function in voiding.

As I start to get close to voiding 2 litres a day, I am getting more hopeful about reducing edema in the legs. The blood clots are a different story, of course, but anything which reduces the pain and swelling associated with my legs is good news.

As pain becomes more manageable, I find hope welling up at the same time urine and water are eliminated.

An Unwanted Journey: Day 1099 - Spirituality (#3)

2008-11-26T10:57:00.003-05:00

My Father and I never talked about religion. He never went to church. He was clearly conservative in his political affiliations, but ideology per se never seemed to be the driving force. Instead, his political viewpoints traced a kind of common-sense fiscal conservatism. He was a practical man. So, not attending church wasn't some kind of statement about a theoretical agnosticism so much as it was an affirmation that Sunday was his one true day off work, once you included all the Saturday family duties tacked on to his paid work week.

Mom was the ideologue in the family. She was also a very young woman who will be the first to admit that she was still very immature when she got married and had given birth to her first child. Unlike Dad, she wasn't very practical at all. Also unlike Dad, she was very vocal about all her opinions and viewpoints. Those viewpoints tended to occur in the stratosphere, with the practical implications being irritating details someone else should figure out. She still has this endearing characteristic!

They were, in many ways, an odd couple, Mom having graduated from Grade 13, Dad dropping out in Grade 9. Mom being quite musical, playing the piano and having what I considered to be a very pleasing singing voice. Dad, on the other hand, seemed to be the only one on his side of the family that didn't make music so much as appreciate it. Apart from that, they clearly loved one another and each child born into the family...at quite regular intervals.

One of the most important gifts Mom and Dad gave to each of their children was freedom and independence. Whatever political or religious opinions we developed, they would never stifle expression or attempts to articulate those viewpoints.

So, when I decided to become intensely involved in Hi-Way Pentecostal Church (including mid-week prayer and Bible study, Friday night youth services, Sunday School, and two worship services), they might not like it, but they never prevented it. All the more impressive considering I had weekly concert band practices and depended on getting to and from school by joining Dad early in the morning (7:00 am) and late in the afternoon (5:00 pm). I also decided to purchase and learn the bass guitar, to lug it to at least 2 services a week, to join a new gospel band in the church which quickly became well-known enough and talented enough to travel to other churches in south-western Ontario for a modest fee.

As those church friendships developed, I gradually became interested in the Pentecostal "message" apart from just the social interaction provided by the church. I had some talent in public speaking, so I was invited frequently to participate as a "youth" speaker, to represent our church in regional events, and to lead meetings, Bible studies and informal discussions about practical theology. So by the end of Grade 13, not only was I ready academically for studies at the University of Waterloo in computer science or pharmacology at the University of Toronto, I was primed too for a "calling" into the Pentecostal ministry. In September 1971, at age 18, I left home to go to college, never to return except for visits and holidays.

By the end of high school, I was the perfect example of the insider/outsider - an outsider with talent and knowledge at school, an insider with talent and knowledge and clear leadership potential at church. And I had become quite skilled at adapting to new situations, making new friends, assuming positions of leadership, relishing chances to learn anything new and enjoying friendships as much, if not more, than family ties.

An Unwanted Journey: Day 1098 - Pain Crisis #2

2008-11-25T17:25:00.001-05:00

This modulation of pain medication isn't easy. This afternoon, there was yet another crisis, coming a few hours after meetings with both the CCAC case management coordinator and the Paramed nurse.

This one scared me, my wife and my youngest son. From an estimate of about a 2 on the pain scale when the crisis started at 1:00 pm, and even with rescheduling the administration of Percoset twice (3 early or extra capsules) until 3:45 pm when my breathing started to drift back into normal territory, I had spiked to 8 at least twice, maybe 3 times.

My temperature was normal, but I had the cold shakes and could barely catch my breath at all. We had to call the pain management emergency number and get the on-call doctor to walk through the symptoms, the timing, the elimination of more serious symptoms, and the ordering of another prescription for Oxycodone without the acetaminophen. My wife is walking inside the front door now with the medication which I can take every hour until we've got this monster chained to the wall.

I'm exhausted and more than a little skeptical about progress, hopeful (always), but waiting for the evidence of better times ahead.

The experience of unbearable pain requires superlatives, something which writers are reluctant to do. Even now, as I've just described the afternoon's experience to my eldest son, I am reluctant to to say things like, "the worst pain crisis yet", because to do so I would have to have a perfect memory of all those other episodes. Perfect memory of pain doesn't exist, as far as I can tell, something for which I am grateful.

One highlight of the interview this morning was when the CCAC case manager asked me if I had any goals. I laughed and told her the story of when I entered my hospital room in the in-patient oncology unit on 10-Nov-2008. There was a white board by my bed with areas to write down names of the doctor, nurse, CCAC worker, social worker etc. And below that was another area for Goals. At the time, my wife and I laughed and I asked, "So I'm supposed to have goals now too?"

We talked a little further until I realized she was really asking about simple things to set as objectives, things like being able to get into the car for a ride around the neighbourhood, or to use my walker to walk the circuit from family room to hallway to dining room to kitchen and back again. Those are goals that I think I can manage right now. We'll start with taking 2-5 steps away from the bed holding on to the walker, turn around, and then walk back to the bed.

One of my perennial problems in life is having too many and too elevated goals. When I've set more appropriate goals (say, learning to chord and play the six-string guitar so that I could sing simple folk songs unaccompanied by anyone else), I've almost always done very well. Cancer is teaching me the same lesson all over again.

Tomorrow's goals are simple:

complete the day without another pain crisis
ensure I can prioritize visits from family and friends and make it possible for those travelling to see me to actually get a chance to do so without jeopardizing my health
schedule a time when my wife can get out with friends without overly worrying about me
write a blog

That's it. I hope my CCAC case manager would approve :>)

An Unwanted Journey: Day 1097 - Pain and Timing Are Critical

2008-11-24T20:51:00.003-05:00

It was only around 2:00 pm this afternoon that the 12.5 mcg dosage fentanyl patch arrived at the pharmacy. We need this to establish a baseline of pain medication. It will be 12 to 24 hours before I begin to feel any symptom relief from the patch. In the meantime, and even afterwards, I will continue the Endocet for break-through medication.

Anything that helps me avoid the literal ups and downs, the growing number of leg and buttock cramps, the vain attempts to coordinate use of the commode with ideal pain relief cycles - that's highest priority for me these days. It's not working well. In fact, later this afternoon, pain spiked to 8 with a good 90 minutes required after that just to relax back down to a 3.

Did I mention that I am absolutely impossible to be around when pain spikes that high? Don't ask me any questions. Don't make any suggestions. I will eventually become human again.

I don't think it's possible for me to overemphasize the importance of pain management. Without low pain levels, I can't concentrate on anything significant. I cannot respond to email, Facebook notes, blog comments or even telephone conversations beyond 5 minutes duration. Even with pain medication that is starting to work to bring levels down to 1, 2 or 3, I will have days of drowsiness and lethargy. Blog entries and the cogency of what I write will undoubtedly suffer.

This upcoming week will be busy with visitors. We've cancelled all other off-site medical visits (they simply don't make a lot of sense anymore). We've also cancelled Red Cross visits until an undetermined date in the future when my wife feels she can't cope with my personal care. Right now she can handle caring for me herself.

My daily ambitions are highly curtailed. If I can help with online banking a little, if I can prepare a list of contact names and phone numbers, if I can do some research about end-of-life issues that aren't already fully organized - that's what I'll do.

I do ask for some patience from those who are writing to me personally and requesting I contact them for an appropriate time for a visit. Please remember that making that request puts the onus back on me - I may forget. The fewer requests you make of me and my wife, the more likely it is that we will be able to manage them.

Here's some further recommendations. If you'd like to visit, decide on a date and time and alternatives and make a specific request. If you'd like to call, go ahead realizing that I may not have energy for as long a conversation as either of us might wish. If you want to do something for me or my family, decide what it is, ask my wife if it's OK and then do it. But don't ask me to figure it out for you - thanks. It is the giver, not the gift that matters right now...believe me.

Thank you again for all your thoughts, prayers and support. I can't keep up, but I do appreciate what you are doing.

An Unwanted Journey: Day 1096 - Loving Me, Loving You

2008-11-23T00:38:00.003-05:00

Somewhere in the past three years since the colonoscopy which diagnosed and located the malignant tumor in my rectum/sigmoid colon, I've made a mistake or two in the day count. I guess it doesn't really matter. But it is 3 years ago today that I had that fateful colonoscopy.

Anniversaries like that are significant. This spring, for instance, my wife and I celebrated our 35th wedding anniversary with a trip to Las Vegas. An unnamed family member celebrated her 60th birthday this year too. And today, 2 unnamed other family members - who just happen to be twins - will be celebrating their 33rd birthdays.

Anniversaries help us keep track of chronology, the flow of time, the investment of energy and resources, and so many other things. They also highlight the emotional landscape of our lives. Wedding anniversaries, birthdays of family members and friends, deaths of dearly departed people in our lives - it's not so much the number as the highlighting of the calendar, the reminder of the ripples in our lives of so many people, dead or alive.

I don't think too many of those who wrote to me yesterday or visited me today had any conscious recognition that I was thinking of the 3rd anniversary of my diagnosis. It was mere coincidence that so many loved ones chose that day to tell me of my impact on them, to reflect on my legacy for my sons, to whisper a tender phrase in my ear, to indicate a wish for some better days ahead with minimal pain and maximal enjoyment of life, to offer supper for tomorrow night, to request forgiveness of unintended infliction of pain, to laugh about girls who provided "memorable" moments for us as teenagers, and so on.

It would have been difficult to coordinate, even if somebody had recalled the significance of the calendar date. An aunt in Calgary, friends right across the country, a brother- and sister-in-law in China, friends and family in the tri-city area, a fellow patient in the United States - they all did their part today to move me away from early morning thoughts of pain and death to a more fundamental recognition that I am part of a sphere of mutual love and respect.

Whatever else happens now, however quickly, whatever the pain and sorrow, nobody can take today away from me. Day 1096 (three years) will remain a reminder of the ties that bind, the love that heals, the hugs, kisses and words that transcend all else.

An Unwanted Journey: Day 1095 - At Home Pain Crisis

2008-11-22T08:16:00.002-05:00

We had so many medical people in to see us yesterday, as well as a visit from a group of colleagues from work, deliveries of medicines and a fruit basket from dear friends, and so on. A lot of activity. I should have anticipated that there would be consequences.

This morning at 5:00 am, I awoke from a lengthy sleep in great discomfort, with slight nausea, and the need to visit the washroom. Doing so was the most difficult yet, with a lingering inability to get my breath back and stabbing pains throughout both my legs. In fact, I think there may be a clot in the right leg to match the large one in the left leg.

We made the emergency call to CALL NURSE from Paramed and asked about pain medications, thinking that since the kit had arrived from the pharmacy yesterday afternoon, we would have the supplies ready for the nurse to give me an injection of some kind. When she called back, we decided instead on repeating the dosage of Percoset from the 3:00 am administration of pain killers. It worked. I slept until 7:00 am and was then able to move with less pain into a seated position on the side of the bed.

But doing this has some implications and immediate side effects. The auditory hallucinations are back again with a vengeance and we will have to watch closely the upper daily dosage limit on the second component - acetaminophen (significant liver damage). Evidently, however, according to the pain specialist doctor who visited us yesterday, we can get a version of the drug without acetaminophen - in other words, with just oxycodone. This should allow us to apply a breakthrough administration of the pain killer as needed.

The clots and the pain crises have reinforced a sobering message from the doctor from yesterday. Although he, like virtually all other medical team members, is very reluctant to talk about how much time is available to me, he made it clear that he thinks we are talking about a matter of weeks rather than months or days. In the early morning, as I awoke less that two hours after administering my regularly scheduled pain medication at 3:00 am, I felt for the first time like time itself was slipping away. To put it simply, unless it gets better, my feeling was that less time would be merciful.

But now (at 8:00 am), with the pain mercifully reduced, there is a corresponding elevation of spirits and hope.

For my friends and family, the experience of the next few weeks will necessarily bring pain into their lives too. It can't be helped. Merely seeing me will remind them of the brevity of life, of other friends and family who have previously battled disease, of their own helplessness... My hope is that there will also be enough laughter, courage, and inspiration to provide them with resources for similar situations that arise in their future. We all need real-life exemplars that come to mind immediately when dealing with medical crises.

Being sick doesn't mean that I've been transformed into a fount of wisdom and courage, but I do fervently hope that my example helps a few individuals deal with their own crises.

An Unwanted Journey: Day 1094 - Spirituality (#2)

2008-11-21T00:02:00.000-05:00

One of the things that I probably most took for granted in establishing my own religious viewpoint was that the context was unequivocally Christian. On neither side of the family was I exposed to individuals of different religions. There were no Buddhists, Hindus, Jews, Muslims, Sikhs, Taoists, or even admittedly atheists. About as far removed from the overall family Christian context one could get was to be Roman Catholic. Instead, it was the Congregationalist and Methodist denominational background that prevailed, especially as embodied in Canada as The United Church.

I was baptized as an infant at Central United Church, the church closest in proximity to the Royal Victoria Hospital where I was born in Barrie. But again, on both sides of the family, although that was the church of choice, it didn't seem to matter much. Attendance was irregular, there wasn't (as far as I can recall) much talk about religious issues - just weddings, funerals and a very occasional Sunday service.

So when Mom took me to Emmanuel Baptist Church, she strayed only minimally from the family standard. The deviation was small, but it was in a direction towards the religious right. The next deviation she took, and which I followed, was even further to the right.

My Mom's friend mentioned a church she had started attending near the Barrie City Hall on Mulcaster Street that was part of a small but fast growing denomination called the Pentecostal Assemblies of Canada. Theologically indistinct from evangelical Baptists, the central feature of the denomination was this business of being baptized in the Holy Spirit and the phenomenon of "speaking in tongues", something which my Mother's friend encouraged Mom to investigate more closely.

We started attending while I was still in primary school. It was here that I quickly started making friends who were different from my neighbourhood friends, all of whom were planning on graduating from Codrington Public School after grade eight into grade nine at Barrie North Collegiate. But both my Mother and Father had attended Barrie Central Collegiate and were big fans of the school's famous Barrie Central Collegiate Concert Band, led by the inimitable W.A. Fisher. One of the first friendships I made was with the son of my Mother's friend, someone whose plans to attend Central Collegiate and to be part of the concert band interested me.

I also recall wanting to start fresh in high school with new friends and with the socially advantaged and privileged kids in our neighbourhoods who played musical instruments with this social phenomenon of the Central band. In a way, it was my Father's musical tastes which helped shape this interest. I distinctly recall listening to Al Hirt and a whole host of big bands that he would play on the stereo system he had in our workshop downstairs. The trumpet was always the star item in the musical universe of the big bands, so I opted to play the cornet/trumpet when I applied to be part of the band.

Another friendship that was cultivated and that has last a lifetime in that church was established shortly after starting high school. M. has been one of my closest friends ever since. So as I began to develop independence from the constraints of neighbourhood friends, music and friendship were compelling aspects.

In addition, the services at the Pentecostal church were a lot of fun for young people. The music has upbeat, loud and emotional. Not only was there an altar call at the end of each service - similar to the Baptists but with far more emotional fervour - there was this very vocal and ecstatic business of speaking in tongues, people laying hands upon one another in attempts to "get" others baptized in the Holy Spirit. There were claims of miraculous physical healing too, with other mysterious "gifts of the Spirit" talked about in hushed tones - things like "interpretation", the ability to take a message delivered in "tongues" by someone else and translate it into an English message direct from God to those in the service; there was discernment and exorcism as well as baptism of adults by immersion in a water tank in front of the entire congregation.

To put it succinctly, there was a "cool" factor for a young person in attending the Pentecostal church, especially for someone finding his independence not only from his parents and other family members, but from the constraints of neighbourhood cliques and status groups.

Young people were highly valued in the Pentecostal church. In fact, at the same time I was establishing these new friendships, becoming immersed in music, attending a different high school with the "cool" and rich kids from across the city, the church had decided to build a brand new building on Anne Street. The church elders wanted the young people to help during the year or so when we moved to a temporary location on Collier Street, doing things like setting up and tearing down for Sunday evening services (those were the most exciting services of all!), and getting involved in using hammers and nails and assisting in the actual building of the new church.

So apart from the apparent disdain on my Father's side of the family for "holy rollers", the juxtaposition of music, excitement, independence, mystery, and most importantly, new friendships conspired to make the choice for Pentecostalism compelling.

(Next, college, university, betrayal, opportunity, and movement from the right to the liturgical centre.)

An Unwanted Journey: Day 1093 - Spirituality (#1)

2008-11-20T23:55:00.000-05:00

A school mate from my high school years has renewed our friendship recently. As we've gotten to know one another better over the past few weeks, D. has been curious about how I've changed over the many years since we studied together at Barrie Central Collegiate, especially in regards to questions of religion. After all, in those days, I was known by my classmates as an evangelical Christian attending Hi-Way Pentecostal Church on Anne Street. In fact, I held leadership positions in the school Christian fellowship club and was often away on weekends singing in a Gospel band, playing the bass guitar, and sometimes preaching at churches throughout south-western Ontario. I planned to attend Bible College after graduation in the hopes of eventually teaching theology at the college level. So, yes, things have changed.

Responding to this request might be a little risky, I suppose. People normally take their religious viewpoints quite seriously and often feel threatened by those with different or ambivalent world views. But if I can talk about my journey with cancer with honesty and integrity, I don't think it's much of a stretch to do so with the specific spiritual aspects of the journey. But to provide context, of course, we need to go well beyond the 3 years of my unwanted journey.

My reflections here will necessarily be quite subjective. I make no claims to true objectivity. I just hope that the narrative is as honest and transparent as possible. It is not an invitation to debate or even an assertion that I've got it right now, merely a description of the trajectory of my religious/spiritual thoughts and feelings.

***

The way I remember it, religious thinking and aspirations were bundled up with the role of my mother and one of her close friends. As a family, we had moved from Minet's Point on the south side of Kempenfelt Bay to a lovely residential area near Codrington Public School in time for me to attend grade one. Just a couple blocks away from the school was Emmanuel Baptist Church, where my mother and I started attending shortly after the move. Every Sunday School class was completed by an invitation from the teacher for someone to "accept Jesus Christ as your Lord and Saviour".

Clearly I felt this was something that would please both my mother and the teacher, so one day I decided to do so. All I can truly recall from this period was a sense that I had made a decision to follow my mother's rather than my father's lead about religion. Dad didn't seem to offer an alternative, so the decision was simple and direct. As I drifted into pre-teen years, I stayed with the evangelical Christianity of my mother, but eventually began identifying my own ego with the ideology I had chosen. In other words, I started to establish independence in regards to religious ideology, even though it was still largely within my mother's network and general world view.

(Later, I'll go into a brief description of how personal experiences and friendship played a pivotal role in the next phase.)

An Unwanted Journey: Day 1092 - Home at Last

2008-11-19T23:49:00.002-05:00

It's late Wednesday evening and I'm sitting up slightly in my medical bed situated right beside the family room's patio doors. I've just awoken from a long, recuperative sleep to the sound of my youngest son preparing some food for himself in the microwave. My wife is nearby, trying to get to sleep and asking me many questions about how I'm feeling, if there is anything she can do for me, if I want some food or something else to drink, if I need her to turn on the light for me, and so on...

In other words, it's wonderful!

Leaving hospital is an interesting experience all on its own. Once a decision was made to discontinue chemotherapy, the wheels were set in motion for discharge. As far as the medical system is concerned, once a bed is theoretically available, then all kinds of energy is released to make it a reality. Yesterday, for instance, the doctor had said casually to me in a kind of quintessential Columboesque "one more thing" moment - about an hour or so after communicating my decision to him about discontinuing chemotherapy - that I probably no longer needed the PICC line. Within another half hour, the PICC line was gone!

Then, in quick succession, I had the CCAC coordinator working with my wife and me to schedule home care nursing visits, arrange a visit from the occupational therapist, ensure prompt delivery and setup of the wheel chair, commode, and medical bed, and to prepare a preliminary schedule for a home assistance team to give my wife some relief from the 24/7 care she will be providing me. That was followed by an in-depth consultation with a dietician helping us both with ideas and recipes for a high-protein diet. Then there was a consultation with the spiritual care provider.

Well, you get the picture.

By 11:00 am this morning, all that was left was to get some prescriptions explained to us both, pull on street clothes for the first time in 10 days, pack up my computer and assorted electronics, get into the wheel chair and be transferred into the passenger seat of our 2009 Camry Hybrid. I thoroughly enjoyed seeing the snow on the ground and all the familiar streetscapes as we drove home.

Getting into the house was very difficult given the continuing edema in both my legs, but within a few minutes I was on the edge of the bed thinking "this is where I want to be!"

The occupational therapist arrived in the middle of the afternoon and was exceptionally helpful in getting orders for additional items needed to make the stay at home more comfortable and safe. She gave us suggestions to improve my safety in getting to and using the washroom (still not ideal).

By tomorrow, we will have the additional items and supplies needed to make the set up very close to that of the hospital room, but with all the comforts of home, the big-screen TV, the view of our backyard and wildlife, the comforting sounds of our house, and the absence of the white noise sounds of the hospital, the announcements of various emergency codes through the PA system, and the audible reminders of being amongst very seriously sick individuals.

The OT also gave us good suggestions about slowing down, avoiding euphoria and expenditures of energy which would only impede getting used to the new accommodations. She also recommended renegotiating the number and frequency of visits for at least a few days, knowing from experience just how energy draining those visits can become when piled up one upon the other.

Email and visits continued. But I tried, as best I could, to simply bask in the positive energy of our home.

I don't know what the days ahead will look like. Clearly, the deep vein thrombosis remains a serious threat. The edema in my legs continues unabated, preventing mobility while throwing my weight into the stratosphere. And, of course, the progress of the underlying disease itself makes the end game a frightening thing to anticipate.

Even though this decision feels right, and even though being home is so rewarding, I know that it is only possible because of our initial commitment to the treatment plan. There is no way I could be here enjoying the comforts of home without having given chemotherapy a real chance. There would have been too many "what if" questions and a sense that I had lacked courage to face the rigours of treatment.

Now, instead there is peace. We will move ahead slowly, enjoying our time together, squeezing every bit of happiness and fulfillment out of the opportunities presented us, relaxing in the natural joys and awe that are our biological, evolutionary heritage, and realizing that although everything changes there is still freedom in the way we face the future.

An Unwanted Journey: Day 1091 - The Heart of Life

2008-11-18T18:20:00.001-05:00

Shortly after publishing yesterday's blog entry, there was a "code red" at the Grand River Hospital. A code red indicates an emergency that could affect all staff and patients, something like a fire. At the GRH, this means shutting doors to all patient rooms, turning off systems like air conditioning, and posting an audible warning to everyone. After the warning was issued, it became eerily quiet. About ten minutes later, the code red was cancelled, doors opened, and the A/C was turned back on.

Less than 90 minutes later, there was a second code red. When it was cancelled, the nurses made the rounds of the rooms, opening doors and reassuring patients that all was under control. Except this time, as the nurse left my bedside, I heard an audible gasp, followed by commotion as other nurses and staff came into the room. My roommate had collapsed in the washroom.

It wasn't until 5:30 am, when I was awoken for a blood draw and to take some medication that I learned what happened. My roommate had died.

He and his wife knew death was coming very soon. But for my other roommate and me, it was hard news. Each of us are having a tough time. Each of us are dealing with a lot of pain and anxiety. But the bottom line is that his journey is over. We still have some steps to take.

This is the face of cancer death. This is what "do not resuscitate" looks like. For me personally, it was like a signature. Death will happen. It will not be pretty. But even so, there are still some decisions you can make now that will affect the course of an admittedly short time frame ahead.

Now that I and my family have agreed to stop chemotherapy and face the future at home, a lot of things are happening very quickly. There were meetings with oncologists, dieticians, social workers, home care coordinators, spiritual care providers, and pain management team members. There was removal of the PICC line. There were surveys (the Edmonton Symptom Assessment System), visits from family and friends, correspondence, phone calls, another "shower on a chair" and, thankfully, an abiding sense of composure about our decision.

More importantly, there were gifts, gifts of compassion and affection. How can I say this? Friends have written to me with personal thoughts sharing the gift of heartfelt expression, words that mean so much more than the words themselves. There were gifts of humour, jokes, stories about family members with similar journeys, reassurances that all will be well for my wife and sons when I am gone, and admiration - gifts that I can never hope to repay.

All I can say is "Thank you!"

An Unwanted Journey: Day 1090 - A Little Composure

2008-11-17T23:12:00.002-05:00

Her name is E. She is a close relative by adoption. She has been a faithful correspondent and supporter throughout my 3-year ordeal with cancer. I recall vividly once in 2006 while I was hospitalized when she said to me, "Sometimes a day at a time is too hard. When it is, just make it an hour at a time."

Several times yesterday and then again in the early morning hours of today as I struggled through the second phospho soda preparation, I would look at the clock on the wall and remember the wisdom in her words. And so I took it an hour at a time, managing the little crises as exactly what they were - little crises.

By close to noon, they were ready for me in the endoscopy unit and I was as close to physical readiness and composure as could be expected. As I lay on my side, I watched the gastroenterologist explore the colon, finding almost nothing of consequence, but settling in finally on the anastomosis of the original low anterior resection surgery from late March 2006. The granulation tissue surrounding the site where the remnants of the rectum and the colon were reconnected was clearly fragile and would ooze blood when prodded and when the doctor took her biopsy samples. There was just enough blood to have been the cause of the rectal bleeding. As far as the gastroenterologist was concerned, I could go home again.

But, of course, there is so much more to be determined now that this small piece of the puzzle has been found and put into place.

Later in the day, as my wife and youngest son and I consulted with my medical oncologist, we had to come back to the implications of knowing the source of the bleeding. All it really means is that blood thinning injections have caused, yet again, rectal bleeding. We cannot go ahead with daily injections. That would be too dangerous. This means that the venous clot in my left leg cannot be treated directly.

Here is where we all learned something from the oncologist that we didn't know before. We have probably all heard of surgical procedures used to dislodge blood clots, especially around the heart or major arteries leading from the heart. But, as it turns out, when it comes to venous clots, there are no equivalent surgical procedures.

So, it is what it is.

I have a clot that will probably stay the way it is for an indeterminate period of time. Because of the underlying adenocarcinoma (like some other cancers), I am prone to clots. When you add on Avastin, you intensify the risk. When you eliminate use of blood thinners, then the only defence I currently have is the IVC filter already in place to protect those clots or clot fragments travelling back to the lungs and/or the heart.

Where does this leave us in regards to chemotherapy?

Well, at the very least, Avastin is off the table; it's too risky. Unfortunately, it is the Avastin that is the component that provides the greatest hope in making my metastatic colorectal cancer a treatable, chronic condition. Without the Avastin, there is now no chemotherapeutic, palliative or otherwise, option to mitigate the risk of death from MCRC. In a phrase, the "cancer is going to get me". Although it may be clotting or bleeding that gets me first.

We can treat me with FOLFIRI, but I've already demonstrated high sensitivity to toxicity of these drugs and reduced tumor responsiveness. We can try a milder capecitabine in oral form, but again all that does is provide 5-FU in lower doses, meaning even less chance for any kind of therapeutic effect, even though the toxic effects remain.

Or...we can stop chemotherapy. This would mean transfer of primary medical care at the Grand River Regional Cancer Centre from my medical oncologist to the Pain Management team who would monitor me in regards to pain, test results and progress of the disease, and then help ease me over to hospice care as required.

As it turned out, my spiritual care provider also arrived in the room at the time my medical oncologist, my wife, and son and I were discussing the medical options. Afterwards, we talked with him about making such tough decisions. There were tears, expression of values, thoughts about weighing pros and cons, more tears, with an eventual composure in a decision which only needed to be ratified with my other son before being acted upon.

I will be stopping chemotherapy.

In the evening, my eldest son and wife and I reviewed the scenarios. True, I can no longer walk effectively. True, I am in much worse shape than before attempting palliative chemotherapy. But with the help of the pain and symptom management team from CCAC and with appropriate household equipment and setup, I think we can forge a home care solution that will allow me to be with my family and to find days of fun, fulfillment, and joy for the time that remains available to me.

Nobody is making any predictions about how long that time might be. But clearly, at least statistically, it's not long. My medical oncologist has had at least one patient who survived for close to a year, but given all my existing conditions, who knows?

But there is a sense right now of peacefulness, of composure, of acceptance about a decision for the road ahead.

An Unwanted Journey: Day 1089 - Indignity

2008-11-16T19:13:00.002-05:00

Colonoscopy preparation is just about the least dignified thing in the world, even when conducted in the privacy and corner of your bathroom at home. But when done in hospital with a clinical attendant right there, a room mate only a few feet away trying to sleep, and with a body already exhausted to the point of utter frustration and hopelessness...there's true indignity in such an experience.

I had to turn away visitors today, for fairly obvious reasons. Still, when doing so, that doesn't mean you aren't in social need. In fact, it may be that at times like this you are most in need of support. The problem is that most of us, like me, are too proud and too horror-struck at the prospect of needing physical support when we are a ball of uncontrolled and uncontrollable angst and physical failure.

I find myself without borders today, without strength, without dignity, and, even though it's there, without support.

And, to make it worse, my carefully crafted email notes don't seem to be reaching their destinations. I'll try to figure that out Monday afternoon, but if you are one of the ones who may be thinking I've ignored your equally well crafted notes to me, rest assured. It's a technical glitch. You are on my mind.

At least it's only another 16 or 17 hours until the colonoscopy. Whatever the news coming from that procedure, there are some major challenges ahead, some very important consultations to take place with my oncologists, and some decisions to be made.

Today I can totally identify with Edward's character in The Bucket List (played by Jack Nicholson), who says, "Somewhere some lucky guy is having a heart attack..."

An Unwanted Journey: Day 1088 - Heroic Measures

2008-11-15T18:59:00.003-05:00

Today, one of my medical oncologists and I had the "big talk". She had, of course, checked with my team leader before doing so, but given the difficulties and life-threatening issues I continue to face, and given that I was on the list for this weekend of patients to be watched "very carefully", the time seemed appropriate.

"Crises tend to happen late at night, on weekends, or otherwise when the people you might want to be on hand aren't. I think I know you fairly well from other conversations and consultations we've had in the past, so I want to ask you about what kind of measures you would expect to be taken in case a clot causes irreparable respiratory failure."

And so it went. We talked about my wife and sons, about discussions I've had already with them about end-of-life concerns, about powers of attorney, wills, life values, etc. It wasn't a long talk, but one in which she could go back to my file and make a notation about the patient's wishes regarding so-called "heroic measures".

Those who regularly read my reflections of an unwanted journey will readily anticipate how I responded to such a question - "Nothing heroic, thank you."

But the simplicity of the reply doesn't really do justice to the magnitude or complexity of the issue at hand.

I will want a follow-up conversation and notation to be made for my file tomorrow...possibly several further discussions.

The importance of today's conversation was to reinforce the fleeting nature of even the most well-informed expectations about survival and quality of life in the face of medical treatment. Nothing can be taken for granted...nothing except, perhaps, the values by which I live and my approach to ultimate issues.

In a way, I'm an open book. Sure, I'm stubborn, opinionated, quick to anger (and those are just my good qualities). But when it comes to approaching ultimate concerns with realism, I think I'm mostly on target - not overly pessimistic, not overly optimistic. As Havelock Ellis once said, "The place where optimism most flourishes is the lunatic asylum." I may be crazy, but I'm not that crazy.

My realism means that most of what I say and do will change; it's provisional. Tomorrow will mean I may modify the nuances of what measures I want taken in times of medical crises. Inevitably, it means changes provoked by further conversations with my wife and sons and other people with differing perspectives and even values from my own. But that can wait until tomorrow.

One of the highlights today was a visit from my Mom and Dad, driving all the way from Barrie through the rain only to have to navigate around the rain-drenched Kitchener-Waterloo Santa Claus parade to find their way to the Grand River Hospital. I don't care how old I am (55 to be exact), there's nothing in the world quite like a mother's caress or a father's hug and kiss. All by themselves, these are two of the best drugs ever administered.

Another highlight was a visit from the CEO of the company where I work, taking time out from the countdown to the next major release of our company's software. Without a doubt, he's the best leader and executive for whom I have ever worked.

And then there's my wife, my best friend, my confidante, my partner, my "person". Her face, her smile, her confidences, her loyalty and affection - well, if there is any medicine better in all the world, bottle it up and sell it for millions.

An Unwanted Journey: Day 1087 - Two Bodies

2008-11-14T21:17:00.002-05:00

Even though I can't walk these days, I bet some of you are having a hard time keeping up with me :)

The landscape for my personal reality shifted yet again. We did the gastroscopy as planned at 11:00 am, which meant I couldn't eat or drink anything from midnight. I was already reasonably assured that the bleeding must be located in the lower gastrointestinal tract, but today confirmed that. Before being rolled into the shower on a commode chair, I dutifully went to the washroom only to be confronted with rectal bleeding - bright red and clotted blood as well. This was a clear indication that the blood thinners were causing the drop in hemoglobin and that they were doing so in the same lower half of the body as they had triggered in April 2006 when I bled much more vigorously and considered my life in danger.

The gastroenterologist performed the gastroscopy and confirmed that there was no evidence of peptic ulcer or any other site for bleeding in the upper GI tract. But this leaves the precise location of the bleeding still a mystery (although there are several excellent candidates). The gastroenterologist recommended and my medical oncologist agreed that I would stay in hospital over the weekend and prepare for a colonoscopy on Monday morning. The hope is that we can discover exactly where the bleeding is located.

In the meantime, no more blood thinners, no more pantoloc, no more IV saline, nothing except rest and regular food until Sunday morning. Then we'll start the colonoscopy preparation with no food, just clear liquids, phospho soda, and the inevitable urgent trips to the washroom - Sunday night is not going to be pleasant at all! In addition, yet another postponement for the 2nd cycle of my chemotherapy until the middle of next week.

Family and colleagues visited again today, always providing a respite and time to reconnect. The hospital's spiritual care provider and I traded some books we had each recommended for one another. I caught up with some wonderful email and comments from family and friends and even got this blog entry in place. Now, if I could only get the swelling and blood clot down in the legs so that I had some mobility, I'd be feeling pretty good again. Until then, I have two bodies - the top half and the lower half.

An Unwanted Journey: Day 1086 - Blood and Scopes

2008-11-13T17:28:00.002-05:00

I hesitate to do a blog entry until the end of the day. Too many things can happen in a very short period of time.

Today is no different. My blood work shows an alarming decrease in hemoglobin levels over the past few days, especially since starting the blood thinners on Monday - from 128 to 78. Eighty triggers an automatic decision for a blood transfusion, which is exactly what transpired over the past few hours.

But before we did the transfusion, I had to get a stool sample for an occult blood test. I have seen no blood in my stool, but the test was unequivocal - there is blood. So where is it coming from? Back in April 2006, I was hospitalized for vomiting blood, but we never did an upper GI tract scope test to confirm the suspected peptic ulcer. Certainly peptic ulcers can cause blood to appear in the stool, even without any apparent pain.

Also in April 2006, I was hospitalized for what we discovered was pulmonary embolii, most likely caused by clots travelling from deep veins in the legs. Initially we treated that with blood thinners, only to have a serious bleeding episode in which I bled profusely from the anus. That was certainly one of the most anxious moments in my life. We stopped the blood thinners and inserted an IVC filter to block any possible blood clots from the lower half of the body migrating to the lungs. Since then, I've had no apparent problems with clots, until this week.

So tomorrow - Friday - I'll be doing the upper GI scope test (technically a esphogogastroduodenoscopy) to see if we can spot a peptic ulcer or some other underlying condition to explain the occult blood in the stool and, by inference, the drop in hemoglobin levels (anaemia). I will prefer to be as sedated as possible for this one, happy to see just the still photographs afterwards and get the results for my file. My hope is that we can continue with the chemotherapy afterwards and still be discharged by the end of the day. If not, what's another weekend in hospital?

My oncologist seems as mystified as I am. But to be cautious, we will not only decrease the dosage of the FOLFIRI by 20%, we will not even treat with Avastin tomorrow, since Avastin can be responsible for both clotting and bleeding in metastatic colorectal cancer patients. One less variable to consider, I guess.

One positive development today was another meeting with the CCAC coordinator who just wanted to reassure my wife and me about our plans for an occupational therapist to visit us at home. They will cover initial costs associated with additional equipment for the home and extend that coverage as required. Depending on what happens with the tests and treatment tomorrow, we may also need twice daily CCAC home care nursing to administer blood thinners sub-cutaneously, at least until I feel confident in doing so myself (my abdomen has a lot of "space", so it will be awhile before we run out of places to stick the needle).

One other thing to look forward to tomorrow is having a shower in the hospital. It will be the first time in my life that I've ever taken a shower sitting on a chair. Whoohoo!

An Unwanted Journey: Day 1085 - New Reality

2008-11-12T23:30:00.001-05:00

Some things I've learned today accumulate into what I guess is a new reality, a new baseline by which I will set my expectations for days in the future.

Blood clots take a very, very long time to dissipate safely and successfully. It won't be a matter of hours, days, or even weeks. It will be a matter of months for the blood-clot-induced swelling of my left leg to dissipate. This means some major changes for me, including a walker to move everywhere until I can manage to get back to just a cane or just my own two legs. It may mean a home wheel chair as well as additional equipment and process changes at home to manage my home care. One thing it definitely means is daily or twice daily home care visits to inject me with anti-coagulants for the rest of my life. Blood clots and bleeding will be a major focus from now on.

Cancer might not be the thing that gets me. It could be a heart attack or pulmonary embolii that choke me to death. This realization lends an added worry and urgency to my medical care and the way my wife and I will deal with subsequent medical crises. No more will I delay trips to the emergency ward.

I can and will get my chemotherapy administered directly in my hospital bed this coming Friday and then be discharged by the end of the day to go home. It's important to recommence chemotherapy if I want to sustain any hope for holding MCRC at bay. There are a lot of monsters out there, but I'm getting good at using my incredible newly patented monster shrinking spray can on them. As long as I can keep them coming at me one-at-a-time, this seems like a reasonable strategy.

Framily continue to provide the spiritual nutrition I need. Phone calls (when the hospital believes I've actually paid my phone bills), email, Facebook comments, notes, inbox items, even Christmas ornaments remind me of the love that's out there waiting to be received. And unanticipated visits from colleagues and one of the hospital's spiritual counsellors rejuvenate me, just as the expected ones from my wife and sons energize me. Even when I think I'm physically in too rough shape to tell people to visit, when they arrive on the doorstep, I manage sufficiently well to enjoy the gesture and the company.

I may not need the comforts of religious language, but I can certainly appreciate how such language provides others with a means of sharing their love and concern directly and succintly. Communication is by nature a messy and problematic way of conveying and receiving messages, especially when we are talking about emotional realities. I think I'm getting better at the receiving end, finding the essence in what is conveyed to me in language which I can no longer use with integrity but which still provides a bedrock and structure for those ministering to me.

Finally, oncology is a huge medical reality. Over the past couple days I've met other oncology patients, nurses, and doctors, overheard stories of cancer diagnoses, and become attuned to what others are suffering or ways in which they have chosen oncology to help other people. Each person has a story. We cannot tell other people's stories effectively, but we can incorporate them into our own journey, sharing the comedy and tragedy as appropriately as possible.

An Unwanted Journey: Day 1084 - Legs of Steel

2008-11-11T19:36:00.003-05:00

Unless you've had dramatically swollen legs (whether through edema or blood clots), you may not understand how painful they can be. You would certainly not appreciate how irrational fears surface about them reaching a breaking point and then exploding like a balloon.

Thankfully, my nurse today knew the sensation and pain of swollen feet and legs (when she was pregnant). It's not always the case, but a general rule among caregivers is that people can only give back sympathy or empathy for something they have experienced themselves. So, today when I shared with a technician in digital imaging how my world had collapsed in around me when I could no longer walk, she didn't really have any idea what that meant on a personal level.

People try, but experience is a teacher that transcends almost all others. A family member I referenced in a another post recently, who has suffered terrible pain for several years now, has tried to explain to me the pain of his legs brought about by thrombosis and the deterioration of nerves. Until now, his stories could never really resonate. Now I know.

Imagine being unable to lift or bend your legs. Imagine touching them and having no give back or even impression from your finger tips. Imagine them growing so large that you can't separate them appreciably. Imagine them being so painful that you need a walker just to hobble a few feet to the washroom. Imagine concerns about falling and having no way to get up again. Imagine telling a nurse that you cannot, absolutely cannot, manage getting into the shower, much less standing upright for a few minutes. Imagine the irrational concern that the swelling would continue until your penis and testicles were surrounded by rock hard flesh making voiding impossible for simply physical reasons.

So, you get a little of the picture. My legs are of steel, but not muscle. Unfortunately, the situation will continue for a while at least. The blood thinners and diuretics will take many more days before I notice much improvement. All of which is not as important as the threat of blood clots themselves. Suddenly, chemo itself appears like child's play, but child's play that requires a minimal level of health for which I which I am currently unqualified.

An Unwanted Journey: Day 1083 - H is for...

2008-11-10T20:09:00.002-05:00

Take your pick:

Hospital
Health Care
Happiness
Hell
Hard Times
Hope

...even all the above.

The surprises continue, I'm afraid. I write this entry from the comfort of a hospital bed on the 6th floor of the Grand River Hospital in the in-patient oncology unit. My wife and son have just left for the evening, and I'm getting ready for what I hope to be a peaceful and uneventful night. When I awake it will be Remembrance Day in Canada and I'll take some time to watch Schindler's List, one of my annual video tributes. Sometime during the day, I'll be transported back down into digital imaging for yet another CT scan, this time of my abdomen.

So, "whaaaaa happened?"

I awoke early this morning, did some reading, took my medication and otherwise prepared for the CCAC nurse to remove my catheter, followed by a consultation with my medical oncologist, followed by my twice postponed 2nd chemotherapy treatment. But shortly after 8:00 am, I noticed that my left leg had swollen dramatically and that I could barely stand, much less walk anywhere. When the CCAC nurse arrived, we went ahead and removed the catheter, and I conveyed my anxiety and dismay about yet another set back. The truth is that I was very emotional, right on the edge, intensely worried and finding it hard to remain positive.

When we arrived at the Grand River Regional Cancer Centre, we met with my oncologist who immediately did a physical, ordered more blood work, another deep vein thrombosis ultrasound, and a tentative abdominal CT scan (do I need to say that the chemotherapy was postponed yet again?).

When the ultrasound came back positive for a blood clot in the left leg, I was immediately admitted to the in-patient oncology department where they began treating me with blood thinners to dissipate the blood clot in the hopes of reducing my tree-trunk-size left leg (the weigh scales also showed that I had gained about 10 lbs in a little over a week; more evidence, if it was needed, that I was retaining fluids in the lower half of my body).

On the other hand, during the day, I began voiding naturally again, thereby avoiding replacing the Foley tube. The nurse also re-dressed my PICC line using a steroid puffer to treat the inflamed area around the crook of the elbow with the whole area then covered with a clear adhesive and dated (thus making it possible again to see the insertion point and the inflammation area directly whenever we wish instead of once every three days when the CCAC nurse comes to my house to change the gauze, etc). We also applied a hydrocortisone cream to the outlying areas of the arm.

One of the cooler moments was informing the attending physician and nurse of my medical history only to have them both remark how they have never heard anyone so well informed about his/her condition. The truth is that my wife had to keep reminding me what year specific treatments were given.

So the next goal is to stay in hospital and get rid of both the blood clot and the swelling in the legs. After that, we need to get me mobile so it won't happen again. Then we can talk about resuming chemotherapy in better shape.

Am I really happy to be hospitalized again? No. But if that is what it takes to get this under control, then so be it.

An Unwanted Journey: Day 1081 - Family Values

2008-11-08T17:41:00.002-05:00

Warning! This post contains opinions (a sure sign that I am finally beginning to feel better - at least for today).

I suppose it was inevitable. Obama is elected President of the United States, thereby unleashing a torrent of hope and optimism, as well as unrealistic expectations. But to counterbalance that, Florida, California, and Arizona voters decide to outlaw gay marriage, resulting in anguish, resignation, and inappropriate fundamentalist exultation.

Cynics might think of this odd scenario in the United States as a conciliatory tradeoff to ease the pain of the transition from a southern religious right domination of political power to a northern liberal democrat ascendancy, the offer being a conservative preservation of the traditional term "marriage" for heterosexual unions only.

I have mixed opinions about the significance of the "Proposition-8" type election results.

As an historian, I readily acknowledge that language is not static, that words like marriage and family have changed and will continue to change as cultures and societies evolve. The suggestion that "marriage" has meant the same thing for all time is lunacy. In fact, part of the pleasure of the study of history is the discovery that appearances are deceptive, that the connotations of words that are apparently universal were not so in reality, and that the context of social institutions must be examined carefully to discover what those institutions really meant.

On the other hand, I also appreciate the importance of new words which help distinguish older and newer meanings. I understand that the word "marriage" isn't as precise as it might be to identify the recognition of committed relationships among gay partners. On the other hand, "union" seems sketchy at best, not even coming close to highlighting the commitment, responsibilities and, yes, rights of same-sex partnerships.

In addition to questions about the meaning of words, we have the more important political issue of doing the right thing and providing appropriate legal recognition of "special" relationships in regards to property, estate, health benefits, and so on.

What does any of this have to do with cancer?

One of the things you will hear cancer patients talking about is "family, friends, colleagues and acquaintances". We use different words to categorize our relationship with those who provide (or don't provide) support to us in our journeys with cancer. Why we do so, at least in part, is to distinguish those in our circle of influence and affection. Traditional distinctions point to expectations and the anticipated depth of supportive relationships.

But cancer (and other life-threatening diseases) often surprise us. Who "shows up" and the support offered are often at odds with expectations.

My own experience has fostered the opinion that what matters most is not family per se, but the choices made by other people to become your family during the journey (some people have suggested the word framily to distinguish these kinds of relationships).

People who have chosen to provide me with regular, visceral, and dependable support often come from outside blood ties. My wife's two sisters, for example, have been outstanding (I guess I shouldn't be too surprised, though, since they were all raised in the same household). My life-long and long-term friends have been extraordinary companions. My colleagues, current and past, have blessed me greatly.

It's the choice, the commitment, that is important. Family values matter, but it is the choice to become and remain a family member that is significant.

An Unwanted Journey: Day 1080 - Long Day's Journey

2008-11-07T23:55:00.002-05:00

It started last night at 10:30 with a trip to the ER. I noticed that the increasing tightness in the lower half of my body was now accompanied by swelling in both legs. Since our refrigerator sheet with "things to watch" included inexplicable swelling and shortness of breath (something I have in spades these days whenever I exert myself - even an activity as simple as visiting the washroom), I obeyed my wife and left with her for the emergency department.

Five hours later, we were on our way home again, bilateral edema having been confirmed, 60 mg of Lasix administered through the PICC line with an immediate effect of decreased swelling and a trio of emptied catheter bags within 45 minutes. There was also the inevitable drama of screaming patients, police guarding men with facial lesions garnered from fighting somebody somewhere, and ER nurses whose skill and knowledge always impress me.

The same ER doctor that had visited me a week ago came by again and talked to me about the edema. The blood work suggested my kidneys were functioning well, but that I could do with increased attention to nutrition, especially consuming more protein. I need as well to keep my legs raised as much as possible while getting some activity, such as walking, whenever I can.

Soon enough - far too soon enough - we were heading back to the cancer centre for the already postponed 2nd chemotherapy session. First, we had to do another blood draw to accompany the blood draw done earlier in the morning in ER. And, I felt we had to contact my medical oncologist to let him know what had transpired.

The blood work confirmed that my albumin was low but otherwise in decent shape for the chemotherapy. After sharing the details of my medical experiences last week with the chemo suite nurse, we paged the oncologist who came over and did a quick examination of my legs. He too was concerned about the shortness of breath and the possibility that my IVC filter might be malfunctioning thereby making a pulmonary embolism a dangerous possibility.

He scheduled immediate tests in the medical imaging department of the hospital for a spiral CT scan of the chest and an ultrasound to look for possible deep vein thrombosis. The chemotherapy treatment was postponed until early next week with the balance of the day devoted to the required tests.

By 5:00 pm, we were back in the cancer centre consulting with an oncologist who confirmed that both tests were negative. This means that I am in no immediate danger of pulmonary embolii...some good and welcome news.

I've boosted my oxycodone to two tablets this evening to quell some of the abdominal pain (I probably can decrease pain medication once the edema starts to lessen tomorrow after I start the oral version of the Lasix) and allow me to do some walking around the house. But, of course, the drama and intensity of my dreams has skyrocketed again.

With such a busy day, there wasn't really much time to reflect. But my curiosity was in full force as the new information and tests came at me one after the other. Now, I'm looking forward to a quiet weekend for resting and relaxing and as much walking around inside the house as I can manage.

Is it OK to be hoping for some routine again?

An Unwanted Journey: Day 1079 - Need to Know

2008-11-06T10:51:00.002-05:00

We have so much medical knowledge available to us these days. Much of the information on the Internet is useless, of course, comprising testimonials for miracle cures and a pooling of the ignorance of many. But in all that chaff, there is some wheat (OK, so when did I get so Biblical in my metaphors?). And surprisingly, it doesn't really take that long to begin to understand and appreciate the technical language of researchers whose abstracts are readily found online.

I suppose the first time I appreciated the incentive to learn and accessibility of specialist medical information was watching the movie Lorenzo's Oil. But over the last three years, I've also come to understand more of what I need to know for my own specific medical condition.

People sometimes get a little impatient with me when I lapse into medical terminology in describing my own situation; but part of that is simply because as I become immersed in such information, I see the distinct advantages of precision that such language conveys to those who know the context for these terms. Over time, friends and family members are learning what I have discovered as well, thereby further facilitating some of our conversations.

But distinguishing what I need to know from what I don't need to know is not always easy. Some things which I have dismissed as purely routine, have turned around and bit me. One example is the use of products for cleaning around the PICC line insertion point, the barrier films used, the swab sticks, the wrap and gauze, and adhesives. Nobody told me that I would need to have this information readily available to answer question about skin sensitivities. But that is precisely what has happened in the past three weeks as home care and cancer centre nurses struggle to help me overcome rashes, itchiness, and concerns about inflammation.

This example only goes to prove that my "anal" approach to medical information simply didn't go far enough. I am keeping a diary of just about everything being done or happening with my body in the hope of avoiding "ignorance" in the future and expedite decisions about using appropriate products.

If I have advice for anyone dealing with such intensive medical care issues, it is this. Learn everything that you can, write it down or get your care giver to write everything down, and get copies of your medical records. Be sure to include both generic and brand-specific information.

This is only useful advice for those who can handle the information overload or have a natural interest in such matters. But even if you're not naturally inclined to learn these details, it helps to have the information available. It saves time, it prevents needless mistakes, and it keeps medical practitioners aware of the important fact that you know what you're talking about. When they realize that, most will respond with more detail and avoid the fluff and platitudes patients so often get as a kind of default communications strategy from their doctors.

What do you need to know? Hard to say precisely, but the best default answer to that question is this: "everything that might possibly be useful; everything that another medical practitioner might want to know."

An Unwanted Journey: Day 1078 - Public and Private Spheres

2008-11-05T14:27:00.004-05:00

I just finished watching the 7th and final episode of the John Adams mini-series this morning. Coming as it did after last night's epic presidential election results in the United States, I am struck once more by the curious intersection of the public and the private spheres, the macro and the micro, the world outside and the world within. In the final episode, John Adams loses his daughter to metastatic breast cancer and his wife to typhoid fever. But he also resumes his deep and fulfilling friendship with Thomas Jefferson, with both men dying on the same day, the 50th anniversary of the signing of the Declaration of Independence (4-July-1826).

The mini-series drama stands as a monumental tribute to the revolutionary age in the United States and does more, in my view, than any collection of scholarly or popular texts could ever hope to achieve in bringing the characters and controversies of the time to life...with one possible exception - the correspondence between Adams and Jefferson that resulted from the renewal of friendship initiated by Adams after the death of his beloved Abigail. That correspondence says much about history lived and history remembered, about that intersection of public and private life.

A colleague and I had a brief correspondence about precisely this thing yesterday as we reflected on the coming Age of Obama and the unwanted journey that I am travelling dealing with metastatic colorectal cancer. In that correspondence I alluded to my desire to be part of the larger world of commerce and industry and the frustrations of being unable to do so because of the side effects of my palliative chemotherapy. I also discussed the irony of how blogging about my unwanted journey may actually have a more significant impact than if I were back at work doing what I love to do (I really don't know how to measure such things).

It struck me this morning that Adams and Jefferson worried, in their correspondence, about how the mere facts of the American struggle for independence revealed very little of the actual personal struggles and sacrifices such men made for their young country. They felt as though true history was being lost with the deaths of the founding fathers, leaving mere facts and mementoes.

Adams and Jefferson are really no different from you and me. True, their struggles involved the dream of independence and freedom, but the rest of us also struggle to make an impact. We also hope that more of our personal lives will be remembered beyond the pieces of paper we have signed, the policies we have helped forge, the software we have developed or supported, the commerce we have encouraged.

There is, of course, no truly satisfying answer to the perennial issue of public and private spheres. Each of us, individually, must find some kind of accommodation or balance. In the case of Adams and Jefferson, the very survival of their private correspondence assured them historical recognition for the truly significant personal spheres of conduct and influence. Today, at the beginning of a new millennium, some of us will blog about our medical journeys, hoping to inform and inspire those who read our entries. Nobody may know the depth of our struggles as fully as we might desire, but the ripples of our lives provide us with some hope, written or merely witnessed by our loved ones.

One thing that helps is to be as fully invested and present where ever we happen to be situated as possible. If that means being fully present in a battle with the ravages of cancer, then so be it. If it means being healthy and without any serious medical concerns, then even better. But we are both obliged, I think, to take our personal worlds and invest them in whatever public sphere of influence is available to us at the time, no matter how small or insignificant it may appear.

An Unwanted Journey: Day 1077 - Cystoscopy

2008-11-04T09:54:00.003-05:00

Curiosity helps preserve equanimity for me these days.

Today, my wife and I went early to St. Mary's Hospital to consult with my urologist. Only after arriving in the Cysto Suite did we realize that I was going to have a cystoscopy as well as a consultation.

Like a colonoscopy, a cystoscopy involves a tube and a camera, this time looking at the urethra and the bladder. Of course, because I am always curious about what is being done to my body, I wanted to see what the urologist was doing and what the inside of the bladder looks like.

There was evidence of inflammation, probably a result of both radiation and chemotherapy, but otherwise nothing out of the ordinary. The prostate was slightly enlarged too, but again that didn't appear problematic and will likely respond to the Flomax used to help with urine flow anyway.

We talked about possible causes for the difficulty voiding. The urologist can't comment specifically on what role constipation played, but he did indicate that pain alone can be sufficient cause to interfere with voiding.

It all seems to come back to pain and pain management.

There are times when I feel like I have no right to talk about pain. One of my close relatives has suffered through incredible pain for several years now without any hope that the pain will decrease. We can, of course, commiserate about pain management, but his chronic pain obviously is far more difficult to handle on a daily basis than my own acute pain.

I know that it's not a contest. But if my own experience is indicative, there is almost nothing more important in dealing with serious medical problems than pain management. When you are suffering serious pain, you can't think properly, you can't make decisions effectively, and you can't really be as involved in dealing with the root causes as you should be. On the other hand, when pain is manageable, no matter how upsetting the underlying condition, it seems easier to cope.

Today, getting dressed and getting to the Cysto Suite were significant challenges. I was out of breath just making my way into the hospital foyer, so when I was offered a wheel chair, I gladly acquiesced. It bothers me that I have so few energy reserves right now, but given the results of the cystoscopy, overall I'm feeling more optimistic about managing this particular side effect of chemotherapy.

The catheter remains in place for now, but will probably be removed by CCAC nurses within a day or two. We will monitor urine flow carefully and do another urology consultation in a week or so. There are more prescriptions to fill too, but if yesterday was barely better, I think today will be noticeably better...especially if Barack Obama wins the election in the United States.

An Unwanted Journey: Day 1076 - Barely Better

2008-11-03T19:30:00.002-05:00

After so much pain, a day with less pain and slightly more mobility is a welcome relief.

Tomorrow I see the urologist, but until then I'm relying on oxycodone to keep the monsters at bay. And it's doing a reasonably good job, good enough to allow me to clean up, shave, wash my hair, and so on. But as an example of how little energy I have left, as soon as I completed my clean up, I had to lie down on the bed for an hour to catch my breath and renew my strength. But doing even such a simple task would have been beyond consideration yesterday or the day before.

Watching HD TV was easier today. I'm getting close to finishing the HBO John Adams mini-series, something which I whole-heartedly recommend to anyone interested in American history. The acting is superb, and from what I've read of David McCullough's Pulitzer-prize-winning biography, reasonably close to the book. With tomorrow being the date of one of the most important presidential elections in recent history, watching this series helps set the stage. It clearly helps Canadians better understand just why Americans are so patriotic and so proud of their revolutionary past.

I try to find encouragement and inspiration where I can, even if the search is limited to what's available on TV. Watching the mini-series reminds me of the many faces of courage. Watching Dexter last night reminded me of how others face cancer and try to retain personal dignity. Watching documentaries and travelogues remind me of the beauty of the world and the evolutionary struggles of our ancestors. Both are strangely compelling and inspirational. And that makes for a barely better day.

An Unwanted Journey: Day 1075 - Day at a Time

2008-11-02T23:52:00.002-05:00

It seems there are no superlatives left to describe times of pain. And it gives me pause as I wonder whether I am underestimating the pain that may yet face me.

Last night was...painful. Again, simply getting from the couch to the washroom took all my energy. There was dizziness and weakness as well, with evidence in low blood pressure, shortness of breath, clammy forehead accompanied by fairly low body temperature. The only relief was sleep. Bowel movements were too frequent and always the occasion for more pain and concern.

This evening, though, I relented and took a single capsule of oxycodone and was pleasantly surprised to feel better than I had all day long.

There were moments, too, when I was coherent enough to share my concerns about the course of treatment thus far with my wife, to share some of my darker thoughts about life with treatment, death and dying, and the courage required to face the future. I need to talk directly with her and my sons about such thoughts and concerns. Otherwise, the sense of isolation and loneliness can become overwhelming.

As usual, advice to take things a day at a time or even an hour at a time helps. Anything more is simply too daunting.

Unfortunately, some attention to the future is always necessary. So, I took the initiative. Given the difficulties of the past few days, it makes sense to cancel the trip to the Raptors game on Wednesday. Much as I regret being unable to take advantage of this wonderful gift from my employer, the event could become a disaster rather than the celebration we both anticipated. If I am lucky, there may be an occasion in the future, but that time isn't now.

As today ends, I have enough energy to say thank you to those who have written or called my wife to inquire. One person in particular demands my thanks. She pointed out, as a caregiver for another person suffering metastatic colorectal cancer, that what I am going through is probably not depression, just a natural physical and psychological response to a set of circumstances that may not be indicative of further treatment cycles. I hope she is right, but more than that I appreciate the insight and encouragement.

An Unwanted Journey: Day 1074 - Depression

2008-11-01T21:13:00.003-04:00

I've got books specifically about cancer and depression. Thus far, I haven't really felt a need to spend much time with them. But now...

It's tough to think your life has much meaning when it takes all your energy to visit the washroom; when watching TV is a major effort; when you haven't left the house in a couple days; when you finally find enough energy to do some online research only to discover extremely depressing statistics about mean time for survival with irinotecan or with Avastin treatment or even mean time to continued progression of disease; when you can't accept visitors because you don't have the energy; when you have to postpone treatment after only one session; when the dosage will be decreased by 20 percent; when the future doesn't look like it will get any better, even for a short period of time.

Yes, probably a very negative perspective. But is it unrealistic?

There are forms I need to fill in merely to be sick with cancer, but I can't find the energy to do the work. There are financial decisions to be made, but I can't concentrate. There are books from friends and family, but I can barely read a couple pages when I need to rest.

I can't even blog with enthusiasm right now. My mind feels as fatigued and lethargic as my body.

Friends, family, and colleagues remain extremely supportive, but I can't even find a sense of fulfillment to say thanks.

So, I guess this is the face of depression.

An Unwanted Journey: Day 1072 - Bit of a Break

2008-10-31T10:14:00.002-04:00

Given the number and severity of side effects I've experienced, we've decided to postpone my second chemotherapy treatment until next Friday. As well, we will reduce the dosage by 20 percent, thereby reducing the side effects as well. An appointment with a urologist is being scheduled to determine if and when I can remove the catheter safely and with renewed bladder function. I've stopped the oxycodone pain killers completely and starting to recalibrate my daily schedule.

The immediate result was a night with deep, deep sleep, followed by a day of lethargy in which the best I could do was watch some of the HBO series John Adams, do an assessment and dressing change with my new CCAC nurses from Paramed, and otherwise try to relax. The sleep was so deep that I was totally unaccustomed to it. I awoke at one point with disorientation, not even knowing momentarily who I was, where I was, and what was going on. That frightened my son, who happened to be in the room when I awoke. But it was only the one night, and my sleeping seems more normal now.

I am looking forward to actually doing something today and being around when the kiddies drop by for Hallowe'en. There will be the Raptors' home opener in HD to watch this evening too. So, it looks like this break may be the start of a trend towards better times...I sure hope so.

An Unwanted Journey: Day 1070 - Root Cause Analysis

2008-10-29T10:34:00.002-04:00

One of my friends (he'll recognize himself immediately when he reads this) was often a proponent of solving operational problems through a tool called root cause analysis (RCA). It isn't rocket science, but in the hands of someone like him, it truly shines as a way to discover the full extent of a problem whose outlines are only modestly appreciated. Then, it continues by employing questions and analyses which sort through the many candidate reasons why the problem arose in the first place, looking for the one, two, or more root causes and secondary causes.

It always struck me, when working with him on problems in which this formal analysis was used, that its applicability went far beyond manufacturing and operational systems in general, right to everyday life issues and even recurring geopolitical controversies.

If the events of the past week are typical, then RCA should be applied by medical staff and patients alike, especially when one realizes that treating symptoms sometimes seems more important to both parties than dealing with the underlying causes.

My wife and I just returned from a 5-hour visit to the emergency ward of the Grand River Hospital. I finally acceded to my wife's demands because the pain had, yet again, become unbearable, and the symptom relief approach I had been taking was itself accentuating the pain in the lower back and abdomen. "She was right, and I was wrong!"

After describing the new pain in the lower back, the recent problem of failure to void my bladder, and the continuing issue of diarrhea and constipation, we went into what I think is a standard RCA approach. We took a urine sample (that was very difficult in itself). We performed a bladder scan and found that I was retaining urine, at least 717 ml. We catheterized and let the bladder drain until 1200 ml was in the bag. We did x-rays on both the bladder and the rectum, hoping to see a correlation between the two organs. We did. The rectum and colon had evidence of stool backup and stagnation.

The doctor then explained the anatomical reasons why constipation might be applying pressure to the bladder, thereby preventing voiding in a natural way. In addition, when he took a medical history, he discovered that I had stopped a 2.5 year Flomax prescription in late July or August. He then explained how doing so could account for a gradual failure of the bladder to void, leaving larger and larger volumes in the bladder until I became symptomatic.

Only then did he recommend a course of treatment to deal with the root causes he had just proposed. Start up the Flomax again over the next few days. This would gradually aid the bladder in voiding entirely rather than partially. Wear a special catheter and leg bag for 2-3 days to void the bladder, thereby allowing the bladder some time to heal and to let the Flomax do its work. As a side benefit, I wouldn't have to deal with self-catheterization (I became pretty good at it in 2006, but doing it once instead of several times a day definitely has advantages for my personal comfort levels). Finally, if my oncologist agrees, I might actually need a prescription for a laxative after all this time spent on treating diarrhea.

Some of the secondary causes we discussed included pain killers in general, oxycodone specifically. These almost always are responsible for some level of constipation. The irinotecan, although it generally has the effect of increasing diarrhea, will sometimes do the exact opposite.

One of the things we didn't talk about but which strikes me as essential is the problem of communication. I noticed at our consultation on Monday that the family physician specializing in oncology and I were using words like diarrhea and bowel movement in slightly different ways. This isn't just a matter of inconvenience, it is directly related to the measurements one uses to determine which approaches to take to symptom relief. Here's one example. If by diarrhea, you mean either watery stool or more frequent stool elimination, then you might be treating something that doesn't exist. If by bowel movement, you mean any elimination from the anus, then obviously the count of bowel movements in a day can be arbitrarily and artificially inflated, thereby leading to treatment of symptoms which don't really exist.

In my own case, I was using the larger definition of diarrhea, while the doctor was using the narrower definition of stool that includes a watery, runny component. By my definition, I had diarrhea; by hers, not so much. It's even worse with bowel movements. I was equating trips to the bathroom involving elimination of stool, no matter how minimal, with bowel movements. She was using it in the narrower sense of counting only those eliminations in which there is "substantial" and "greater than normal" watery consistency of stool. This meant my counts were often double or triple what hers would have been. Is it any wonder that I might have been following a treatment protocol for diarrhea when I should have been following one for constipation?

When we arrived home, I took half the normal dosage of oxycodone for pain relief. But even at the time, it was clear to me that having voided the bladder left me with very little pain at all. In fact, I may simply go "cold turkey" on the pain medications later in the day.

I know that this is a lot of detail for something that most people would rather not discuss publicly. But, given the dangers inherent in treating symptoms rather than discovering root causes, and given the very significant problems of communication and definition of terms, it's clear to me that medical staff and patients should be having these conversations and doing root cause analysis.

Instead of having a week from hell, it might have been a somewhat interesting journey through purgatory.

An Unwanted Journey: Day 1067 - Hearing Voices

2008-10-26T19:11:00.002-04:00

A Beautiful Mind. Well, at least when I'm dreaming.

One of oxycodone's documented side effects is auditory hallucinations - hearing voices. If hallucinations can be defined simply as "perceptions that occur without connection to an appropriate source", then the auditory variety can be especially disturbing and threatening. Why? Because simply opening your eyes might not resolve reality from illusion.

If you are addicted to sports on HD TV, then there's a chance you stayed up very late last night watching the Phillies and the Rays duke it out in game three into the wee hours of the morning after a very substantial rain delay made an otherwise long affair into a marathon. When I finally turned off the TV and closed my eyes, I started hearing voices. The voices I heard were my wife and my eldest son. What they were saying was slightly muffled, but it made sense, so much so that I opened my eyes and asked my wife if she was talking to me. She wasn't.

And so I quickly discovered that "hearing voices" was disturbingly closer to the real thing than I otherwise would have imagined. Not only does this give me a better understanding of the world of schizophrenia, it offers perspective on the illumination of mystics who have "heard" the voice of God. It may even hint at the compulsions of the criminally insane.

Fortunately, in my case, the hallucinations were rather mundane, reminders of "things to do" (if you must know) - the kind of vocalization often heard in our home emanating from the only female voice in the household unit. Somebody with a death wish might call this nagging. The three male members of our household have learned to think of this voice as the voice of God.

If you've taken any "healing journey" courses for cancer patients, then you'll know something about the value of guided and unguided meditations. Even though my auditory hallucinations last night were drug induced, it got me thinking along lines explored by the "freaky" philosophers of the 60s, people like Timothy Leary.

My admittedly weak thought goes like this: what if you could induce the capacity for hearing voices and then actively cultivate those voices as part of a healing, multi-sensual experience? Certainly imagining a voice and "hearing voices" are a world apart in intensity. If one could harness the intensity of auditory hallucinations and put it to good use...

I know. Probably a bad idea. Too many variables and probably too many things which could go wrong. Probably simpler and better to cultivate lucid dreaming skills which are completely under the control of the individual.

My wife might have a different viewpoint. How much more effective if "she" could harness the voice of God and dispense it on demand to her three dearly loved and frustratingly male family members.

An Unwanted Journey: Day 1066 - Peaking at 9

2008-10-25T11:29:00.002-04:00

Last night, just as it appeared my pain might be manageable, I had a night from hell. Peaking at 9 out of 10 on the pain Richter scale was the worst of it (around 3:30 am), but the pain was never below a 6. What I discovered was that the oxycodone was ineffective against the general rectal area pain. I also realized that a single tablet was almost useless. I had to up the dosage to 2 tablets every 6 hours to establish a baseline for the rest of the pain distributed everywhere else.

It's difficult to describe pain like this. The rectal pain is a kind of diffuse pain which comes in waves and is greatly increased merely by moving. Getting off the couch feels like someone stabbing me in the buttocks. Walking is very difficult - only moving very, very slowly helps. Bending over can be excruciating. The waves of pain are directly related to the "mechanical" sensation of needing to pass gas or have a bowel movement. BMs, however, have become a kind of Marquis de Sade experience.

At least with the two tablets of oxycodone and a couple well timed BMs, I was able to avoid a trip to the emergency ward of the hospital.

To say I am a wreck is a real understatement. My tactic is very simple - keep almost completely still, take 2 oxycodone tablets every 6 hours, and hope that BMs will relieve some rectal pain.

Oxycodone has some very odd mental side effects. Vivid, nightmarish dreams are one part. But what is worse is that my thinking (if you can call it that) is very fuzzy and nonsensical.

Last night, for instance, I remember thinking that I needed to carefully distinguish between the types of pain I was feeling and what was working to alleviate each. So I'd closed my eyes and then try to separate the "mechanical" pain of constipation/diarrhea from the general pain, only to find myself "thinking" that there was a third pain, one which could be treated by other patients looking at me and directing special pain-killing thoughts over a distance to me specifically. If we established eye contact, some kind of telepathic connection was created; the person could immediately discern what was going on and then respond with a healing thought sent my way. Of course, it was reciprocal, so we'd have to negotiate a quid pro quo arrangement (telepathically, of course).

As I rehearse this nonsensical thinking, I realize that most of my logic has departed. Too many variables, drugs, decisions, symptoms. Pain holds the trump card right now. All I can do is ride it out and depend on my caregivers to see me through this.

An Unwanted Journey: Day 1065 - Drugged

2008-10-24T18:36:00.004-04:00

Obviously, thinking isn't my strength this week. Or writing. Or staying awake. Or being pain-free.

Thursday, just as the fatigue seemed to dissipate slightly, there was yet another side effect - an incredibly painful aching in the nether regions. In fact, last night was about the worst I can recall since 2006 when I was convinced I had a bowel obstruction during my radiation treatment. Extra strength Tylenol didn't even touch this pain.

Today was only slightly better, until I got a prescription for oxycodone, a narcotic I had refused to continue taking while recovering in hospital in September from the laparotomy. At the time, as soon as I closed my eyes to go to sleep, I had the most bizarre and disturbing nightmares. I recall thinking that the medicine was worse than the cure.

This time was different, though. The pain was far worse so I was strongly motivated. As well, I had no intention to go asleep right away. Now, finally, I'm feeling reasonably human again.

Still, the Community Care Access Centre has decided to have a special pain and symptom management team involved with my home care. This is probably a good thing given the complexity of my past treatment and the drugs that are part of my chemotherapy protocol.

I'm hoping to start reading and reflecting again soon, maybe writing something in my blog entries about more than a simple reciting of pain, fatigue, and medication. But this too is part of the journey...

An Unwanted Journey: Day 1063 - Unrelenting Fatigue

2008-10-22T11:42:00.002-04:00

Monday was a good day, so good in fact that I visited some colleagues at work. As I chatted with my colleagues, I wondered if I could start doing something useful for the team. After all, I was feeling good, and I was excited to hear about all the initiatives underway. Sure, I was tired later in the day, but overall felt great.

Then came Tuesday. I know memory isn't always helpful in trying to evaluate the fatigue associated with chemotherapy, but I don't remember feeling quite so out of it before. I must have slept 18 hours at a minimum, only just arising about 10:30 am this morning with at least a slightly more energetic sense than Tuesday.

This is why I realize that I cannot make unrealistic commitments about my time and energy. If days like yesterday (and perhaps today) are the price I must pay to maintain a modicum of health in the fight against cancer, then that's what I'll do. Hmmm, time for another nap.

An Unwanted Journey: Day 1061 - PICC'd, Flushed, Infused

2008-10-19T15:04:00.007-04:00

One chemotherapy infusion down, 5 more to go before the next CT scan in about 3 months.

The first Avastin and FOLFIRI treatment is coursing through my veins. The PICC line is in place, finally. And I did the first of my daily flushing of the PICC line with separate saline and heparin solutions after the Comcare nurse disconnected the Baxter "baby bottle". Side effects have been mild thus far...mainly insomnia from the anti-nausea drugs, very little diarrhea, and of course some temporary chemo-brain.

The latter reminds me of an article we read at the cancer centre Friday by an observant and funny breast cancer survivor:

" If cancer offers you a glimpse of your mortality, chemotherapy offers you a glimpse of your senility." - Jenny Allen, "Memoir : Enough about my cancer", in More: Canada's Magazine Celebrating Women Over Forty, Feb/Mar 2008, p.116 (of course, I was only interested in the articles!)

If I could count on chemotherapy being like this regularly, then it really wouldn't be so bad (at least after 2 days of continuous infusion). But I know from experience that it gets progressively worse, so I need to reserve judgement a while longer.

My biomarkers are reasonably good right now too. My temperature is steady and my blood pressure and pulse rates are all good. In a couple weeks, I should have updates on the CEA levels, white blood cell counts, etc. So at this point, I'm feeling pretty good. Even the rash on my chest and right biceps from the first attempt at inserting the PICC line is starting to clear up.

And so the roller coaster ride begins again.

If you've followed any cancer blogs before - including my own - you'll recognize that nothing can be taken for granted. There are good days and bad days, times when the therapy appears to be working, other times when new metastases appear from nowhere, days of strength and vitality, days of fatigue and fear.

But today is unequivocally one of the good days.

An Unwanted Journey: Day 1059 - The Goodness of Friends

2008-10-17T17:20:00.002-04:00

Friendship and kindness are wonderful comforting companions when you're traveling an unwanted journey.

Today, after arriving home from an 8-hour session at the Grand River Regional Cancer Centre's chemo suite, a package was waiting for me from a friend. He had arranged for a dedicated, signed copy of Neil Peart's book Ghost Rider: Travels on the Healing Road: "To Don. Good luck on the 'Healing Road'. All the best, Neil Peart." The gift came just when I was feeling completely overwhelmed with the start of my chemotherapy.

Eight hours in the chemo suite is more than enough. But it culminated with a "baby bottle" of 5-FU and watching another patient in tears being comforted by a family member. It hit me all of a sudden that there were too many stories in that room, too many people facing very difficult circumstances. Earlier in the afternoon, for example, as I returned from the washroom wheeling my pole with the drugs being infused into my PICC line, another patient commented on my LIVESTRONG wrist band. He too had one. We talked about both being on palliative chemotherapy, the value of Lance Armstrong's work for cancer patients, and the need to maintain our strength and optimism. Just a couple moments when strangers tend towards friendship.

My nurse today was very kind and considerate, as was my wife of course. Kindness doesn't just come from friends. It comes from family members and nursing staff. Wednesday, my parents brought me another inspirational book when they came for a visit. My brother joined them just because he wanted to see me before chemo began too.

Friends and family members continue to write - "thinking of you" email notes, humorous items, election results post mortems, even dietary and travel destination recommendations. It's all about kindness. That too is sometimes overwhelming, a kind of compensating weight on balancing scales - treatment on one side, comforting relationships on the other.

Tipping the scale can happen at any time. In fact, it's inevitable. And then the tears come...some from sadness, some from gratitude, some from laughter, some from weariness, some even from recognition and commiserating with others traveling similar paths.

****

Just a few medical details for those interested...

CEA - 9.8, up another 2 points

Liver lesions - the 2 visible ones have grown about a centimetre to 4 cm each.

PICC line insertion - the standard insertion technique didn't work, leaving a large bruise on my right biceps; even the medical imaging procedure required two attempts on my left-arm biceps with 2 doctors and 3 nurses (very sore)

Avastin and Irinotecan treatment - not much of an initial reaction today other than trouble focusing (couldn't drive back home) and some obvious chemo-brain thinking and speaking (noticed by both the attending nurse and my wife - "Gee, Don, when did you get so stupid!")

Laparotomy incision - healing nicely; starting to shower the area directly now with the steri-strips starting to come off under the water; regaining some core muscular control, although it's slow going

An Unwanted Journey: Day 1056 - Watching

2008-10-14T12:56:00.005-04:00

"It's easier to die than to watch someone die." - TV series House, episode Maternity (first aired 7-Dec-2004)

I'm watching my wife these days. Watching her take care of me. Watching her coordinate all the medical appointments. Watching her fret about the future, about life without me by her side, about how I will respond to chemotherapy, about how my sons are doing, about everything.

She was with me again today as we went to the Grand River Regional Cancer Centre for blood work and for the PICC line insertion. I told her she didn't need to join me, since I'd probably be there for several hours, but she insisted, and I was glad to have her with me.

As it turned out, the PICC line procedure had to be aborted after a couple failed attempts to find a suitable vein in my right arm. It's not fun having a needle probing inside your biceps looking for that mysteriously disappearing vein. And so we left the centre far earlier than expected and will have to go back a couple days from now to medical imaging where they will put a dye into my right arm and then use x-rays to find the best candidate vein for the PICC line.

This is actually a good thing. I remember having problems with the PICC line previously during chemotherapy. If we get a good vein and have fewer curves in the tube, then the drugs should have easier and more direct access to the heart. That should mean less time spent in the chemo suite trying to unblock the line.

My wife will come with me to all those appointments. She'll come on Thursday too, as we do something we've never done before - a fluoroscopy.

As I watched her while waiting for my appointment today, I hoped that she never has to go through treatment like this for herself. If she does, I wonder who will accompany her for treatment. Will it be one of our sons? Will it be another life partner? Will it be a friend? I'd like, of course, for it to be me...but that's not going to happen.

I know it is very stressful for her to watch me go through all this. I know it's difficult for our sons, for my parents, for her mother, for our close relatives, for our close friends, for my colleagues and others. But most of all, it is she who has to deal with the watching and waiting.

Whether it's easier to die than to watch someone die can be debated endlessly. Let's just say that care givers need more care than they're often given.

An Unwanted Journey: Day 1054 - In Praise of Mediocrity

2008-10-12T13:10:00.004-04:00

Celebrity. Greatness. Reputation. Power.

So much of our lives is devoted to worship and emulation of those who are "successful". It's simply everywhere. The implications of success are, when unexamined, absolutely ridiculous:

having the most money

being the most attractive

elected to the highest office

being the tallest, the most muscular, the thinnest, the youngest

Actors, entrepreneurs, athletes, politicians, authors, and a few other occupations are part of a category where you either succeed and become giants within your vocation or struggle to get by, part of the multitude of dwarves who didn't scale the heights. Those occupations are scalable.

Most of the rest of us work in occupations where we are paid by the hour (if paid at all) where we produce a unit of work. We may discover a few tricks and become more efficient. We learn a bit more and get a few raises. We make a little more, a little less, but will probably never match the wild extremes of poverty and wealth of those in so-called scalable occupations.

In a word, we're mediocre...at least according to the prevailing perspective on success.

But viewed from another perspective, it can easily be argued that the vast hordes of the mediocre collectively make very significant contributions. In my own work life, I've seen this repeatedly. Programmers and developers, designers, writers, quality assurance staff, customer support specialists - their collective efforts make the difference between corporate success and failure. From that perspective - from the perspective of the collective - there is no progress without the aggregate contributions of those who will never receive the extreme rewards of outlandish, scaleable, success.

I guess it's inevitable that when you stare death in the face, you wonder about how your own life will be evaluated. Will I be considered a success? Will my contributions stand the test of time? In the world of high technology especially, what does it really mean to stand the test of time? What about on a personal level? Will my character and influence be judged in a positive fashion? Will the way I face declining health and end of life inspire others?

I'd like to argue here that mediocrity, especially when viewed as a modest kind of tinkering with the "stuff" that comes your way in life, can be considered a success. Right now, for instance, I find myself tinkering with ideas and the stuff of everyday life in the context of metastatic colorectal cancer. Unlike Randy Pausch and Leroy Sievers, I don't have hundreds, perhaps thousands, of people following my blog entries to see what I've written. I don't have dozens of people contributing their own accounts in the comments section of my entries on a daily basis. In other words, I don't have the "numbers" associated with standard models of success.

On the other hand, when the ripples of my own tinkering are viewed on a collective basis, my "mediocrity" is definitely making a contribution. My doctors, my nurses, my family, my friends, my colleagues, my acquaintances, my silent readers, my unpublished, private correspondents - they all demonstrate to me that I am making an impact.

On Friday, I start my palliative chemotherapy treatment. Ten years ago to the day, one of my dear friends died from the scourge of metastatic colorectal cancer. I miss her dearly. But as her husband corresponded with me recently, her imprint is still felt today in the lives of those she touched, both in life and in the example of meeting death head on and with tremendous courage.

By almost all popular standards of success, we are both examples of the mediocre. And yet I'd like to think we can both be considered successful. Those incremental imprints, those modest contributions of courage and tenacity, those moments of insight - spread out over the admittedly small cadre of people who care - they will help other people meet their own life-and-death struggles. I really don't know if such contributions should be praised, but I do believe they help us move forward with greater confidence and meaning.

An Unwanted Journey: Day 1053 - "Life as a Horse"

2008-10-11T00:05:00.000-04:00

Marc's Belgians 019
Originally uploaded by rtfax

"Seen from a distance, it's perfect." - tagline from the 2001 movie Life as a House

If someone were to ask me, "What is the most beautiful animal in the world today?", I think I would have to answer, "The horse."

Yesterday, a friend took me for the second time to visit two of his Belgian horses - Sweet Sherry and Classy Barb. It was the perfect autumn day. Sunny skies, leaves turning colour in the woods around the farm, few insects, apple trees dropping fruit in the yard, a wagon ride, brushing the sweat from Sweet Sherry's flanks after taking over the reins and steering the two horses back into the barn, a few photographs, and talking with my friend about his horses.

We talked about other things, of course. How my family was dealing with the news of my prognosis. How my sons were doing in university. How my incision was healing. What kind of chemotherapy I'd be getting next week. His recent walking trip in the villages of Tuscany. Red wine. Big screen TVs. Canadian Thanksgiving.

Often, when driving north to visit family members, we travel through Orangeville. We always see horses, admiring them from a distance, but seldom stopping the car to take a longer look. But I'm stopping more often these days to indulge myself when I notice something beautiful or merely interesting.

Yesterday was one of those days when time didn't matter. It was just about seeing Marc's horses, hitching them up and driving them for a while, and enjoying the sheer beauty of two Belgians. And they are truly beautiful, not just from a distance, but up close and personal as well.

An Unwanted Journey: Day 1052 - "It's No Fair!"

2008-10-10T00:05:00.004-04:00

Sometimes TV is too close.

Yesterday I visited with colleagues at work and another friend for coffee. In both cases, I was asked what I'm doing to fill my days. One of the answers, of course, is that I'm watching more television. As I heal from surgery, that's natural enough, and as I begin chemotherapy, television will remain one of the few things I can do to pass time.

Sure, I'm reading and writing and visiting, but television has become an important part of how I pass time.

It's odd, though. Admitting that to colleagues and friends sometimes seems like a confession rather than a simple answer to a simple question. Maybe it's because the conventional wisdom is that watching television is a waste of time, something analogous to drinking whisky alone from a flask hidden inside your jacket. It doesn't matter that most people do the same. What matters is that you pretend to do something more "useful" or "productive" with your time.

But whatever the merits or demerits of watching television to pass time, I'm doing it, especially now that we have high definition channels and a big screen TV (a concession from my wife that there won't be many other things that I can do in the months ahead).

Yesterday night, we watched the season premieres for CSI and Grey's Anatomy. In case you haven't watched these episodes, I won't spoil the entire plot for you, except to say that both involved death and dying. But one thread of Grey's Anatomy was entirely too close to reality for me.

A young woman with a cheery disposition comes into the hospital for a liver resection for cancer metastases. She is confident that surgery will be curative. Instead, as it was for me, surgery reveals that the CT scan didn't discover the full extent of the metastases. The surgeons have to close her up and tell her, in effect, that she is dying.

When Meredith sits by her bedside, the woman tries to remain cheerful, but breaks down sobbing "It's no fair!" repeatedly.

I've admitted to a few people recently that there are moments when I feel the injustice of things deeply. There are moments when I want to grab one of my oncologists and demand an answer to the question, "Why the hell couldn't you find the metastases earlier than you did? I mean, I did everything you told me to do. I had all the lab tests done exactly on time. I never missed an appointment. I told you about all the symptoms I experienced regularly. Why is this happening to me? It's not fair!"

In the CSI episode, Grissom says that the team is trained to comfort the relatives of murder victims with the phrase, "I'm so sorry for your loss...until now we didn't realize how inadequate that phrase truly is."

Others have said similar things to me. I've had to say similar things to myself - "sorry for your loss" - because no matter how unfair, no matter how deeply felt the injustice, the loss remains. Being sorry, and saying so - however inadequate the words may be - is still better than nothing at all.

Maybe it's time to watch some comedy on the big screen boob tube...

An Unwanted Journey: Day 1051 - Black Swans and Tinkering

2008-10-09T09:30:00.005-04:00

As some of you know, I have a second blog. It is called Bringing Closure and is devoted to the more technical aspects of my career in information technology.

On December 31st, 2007, I wrote a brief entry about a book called The Black Swan - The Impact of the Highly Improbable, in which I mused about anticipating the unexpected during the course of 2008. It seems that anticipating the unexpected is far more difficult than I ever could have imagined.

I certainly did not anticipate that I would have donated my collection of information technology books to the executive of the Waterloo Wellington Information Technology Professionals group that I co-founded in 2005; that the reason for doing so was that metastatic colorectal cancer would rob me of my work and put me on short- and long-term disability with a two-year prognosis; that I would have an abortive liver resection; that I would be starting chemotherapy with Avastin and FOLFIRI; that both our family pets would have died; or even that the credit crunch in the United States would turn into a global market panic.

Nor did I ever suspect that so many of my career-related acquaintances would become dear friends, an entirely new support network of people committed to helping me deal with terrible health diagnoses and prognoses. Maybe I wasn't completely blind to these possibilities, but neither was I anticipating them in any meaningful way.

But like the author of the book The Black Swan, I employ stories and vignettes in this journal to illustrate my unwanted journey, even though most of the significant aspects of that journey were entirely unanticipated, something which narratives blur and confuse.

My blog is entitled Don Spencer's Artifacts, an allusion to my confidence in the power of ideas - artifacts - while the major thread of this blog is entitled An Unwanted Journey, a series of vignettes about the vagaries of my personal experience of colorectal cancer. It is the vignettes, not so much the ideas, that illustrate the value of this blog. Certainly ideas are not without merit, it's just that they lack the resonance and memorable quality of narratives.

My narratives, like all narratives, impose an order on the past. They transform a black swan into something we all think we could have predicted beforehand. But when the truth is told (albeit in narrative fashion), all I've really done is tinker - after the fact - with material provided in an apparently random fashion.

Here's an example.

Yesterday I met for coffee with a colleague at a place called Matter of Taste, where we sipped latte and cappuccino and talked about books we were reading (and a little about work). My friend spoke about the markets, especially the markets in the United States, and the catastrophic loss of confidence we are all witnessing. That triggered a thought for me about a couple books still in my personal collection by the author Nassim Taleb. I promised to forward a reference to the titles when I returned home. In doing so, I found the books and started browsing them again. As I did so, I recognized a key word - tinker - that had just surfaced in some apparently unrelated reading I had done recently of the relatively new science of Evo-Devo, evolutionary developmental biology (see Sean B. Carroll's Fruitfly Study Shows How Evolution Wings It). From there, as I continued with my online search, I discovered that Taleb's forthcoming book is tentatively titled Tinkering.

After the fact, it all seems so obvious. Evolution apparently works through tinkering with a simple chemistry set of DNA. Free market economies work through endless and free tinkering (not planning or regulation). Cancer treatment works by tinkering with the body's own defensive and regulatory systems (when it works at all). Narratives work by tinkering with the random components of a life lived, especially one in which other people figure prominently.

Apparently it's all about black swans and tinkering.

An Unwanted Journey: Day 1049 - Rainbows and Clouds

2008-10-07T15:19:00.002-04:00

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Originally uploaded by rtfax

People sometimes have a hard time reading blogs like this. I think I understand why that is the case.

When I was recovering from my first bout with cancer, when I was told there was "no evidence of disease", I would struggle sometimes reading updates from Randy Pausch or Leroy Sievers. Part of that struggle, I assumed, was that their declining health reminded me that I was doing better than they were. I didn't like those reminders. I was glad I was feeling better, so anyone reminding me that cancer sucks, that cancer kills, that cancer can come back at any moment - well, those were things I would rather forget.

But when I learned that my cancer was back and that it had metastasized to the liver (and later would learn that it had metastasized outside the liver as well), even then I had a hard time reading the updates.

And then they died. As did two other acquaintances within the past few weeks.

Reading what they had written filled me with foreboding and a sense of dread. Sure, much of what they wrote was also inspirational and truly helpful in setting priorities and reflecting on what a journey with cancer could be. But it's hard work and it demands courage. Life before cancer seemed simpler and didn't make so many demands.

I realize that there are distinct advantages in not being forced into thinking about a relatively narrow, circumscribed, limited future. You plan, you think about eventually having grandchildren, you consider what retirement will look like, what kind of contributions you can still make, what talents you can still develop.

But then the doctor tells you that your prognosis is about 20 to 24 months, that if you want to do some traveling, you should probably do it now, that the future will be filled with chemo and side effects. All of a sudden, much of the future simply drops off the map. Is it any wonder that people don't want to be reminded of such things?

But there are advantages too. Some things which one might otherwise take for granted offer up nuances and meaning that wasn't as obvious before. You open your eyes and see things that you might otherwise gloss over - things like rainbows and clouds, things like water rushing over the Horseshoe Falls, things like winning modestly at the casino, things like a meal with your family at the Outback, things like watching a Raptors game together, things like listening to your favourites play list on the iPod while traveling in the car, things like a sip of a piping hot and ridiculously expensive Americano with Hazelnut flavouring at the hotel's Starbucks...

These are things that slip by, often unnoticed, sometimes observed but discounted because they don't fit with your planning exercises, things that are by nature fleeting and temporary. I don't mean to sound unnecessarily Buddhist here, but the truth is that all things change, all things decay, all things will fade - it's just a matter of when. The good news in all this is that redirecting and limiting one's perspective to narrower bands of time means that those fleeting experiences can be savoured and relished. As I've hinted before, it's a matter of attitude and a choice to invest oneself as fully as possible in the time that is available.

Even though I would rather have the luxury of more choice, the choices available to me now are good enough. After all, rainbows and clouds can be absolutely glorious.

An Unwanted Journey: Day 1042 - Ultimate Freedom

2008-09-30T16:10:00.003-04:00

My "balance" friend came by last night for a quick visit and to give me a gift - "thanks so much, gentleascent!"

During our conversation, we talked about choosing the attitude with which we confront life's twists and turns. As I had just been reading Victor Frankl's Man's Search For Meaning, I named that choice as Gordon Allport did in the preface to the 1984 edition - "ultimate freedom". Frankl himself, in the second part of the book's discussion of logotherapy, says,

"every human being has the freedom to change at any instant." (p.154)

It takes very little for anyone to confirm that freedom, at least experientially (I'm not making any claims about the biochemistry involved). Whenever you are self-aware and something happens, if you pause for just a moment, you will realize that there are several alternative responses available to you. Even if it is simply to control the "heat" of the response by mildly increasing or decreasing the intensity of your thoughts, emotions, or behaviour, you'll see what I mean. With practice, that choice to respond by modulating intensity may build the "muscle" and eventually give way to alternate responses in kind.

There is, of course, a whole self-help literature out there about neuro-associative conditioning and neuro-linguistic programming. But what I'm really talking about here is a very simple, yet profound, realization. Cancer takes away so many of our freedoms, much in the same way that the dehumanization described by Frankl did in the concentration camps of the Second World War. But ultimately, neither brutality nor disease can erase that essential freedom each of us has to choose our attitude, our response, or merely to modulate the intensity of the response which comes instinctively.

My youngest son and I were talking today about how all his first-year arts and social science courses keep coming back to the concept of "freedom". I mentioned a course I did in my fourth year of philosophy on action and determinism that ended up being a course with just me and my professor. At the end of the year I distinctly recall becoming persuaded that agency was a fundamental precept that preserved the ideal of human freedom. I can't remember any details now, but the point is simply that when faced with one of life's cruelest diseases, there are philosophical, psychological, and experiential resources available to each of us to support the notion that cancer cannot steal our freedom away completely.

And if it is true for the end of life under extreme duress, then how more much important that we live our lives now with this principle in mind. As Frank (played by Jack Nicholson) says when another character in the movie The Departed states that someone is "on her way out", "We all are; act accordingly."

An Unwanted Journey: Day 1039 - Comfort for my Colorectal Cancer Cohort

2008-09-27T09:42:00.002-04:00

Our numbers are growing. That's not necessarily a good thing. But it is a consequence of blogging about metastatic colorectal cancer.

I'm referring here to those who are joining me in discussing our experiences with MCRC, with treatment, with our hopes, dreams, anxieties, and laughter. In the past few weeks, I have received email and Facebook messages from others dealing with metastatic colorectal cancer themselves, some of them receiving treatment at the Grand River Regional Cancer Centre, some of them elsewhere in Canada, some of them simply commiserating with me about the ravages and blessings of a journey with cancer.

As we talk privately, I know we'll find comfort together in both the good and the bad of our situation.

Playing the Cancer Card

One thing I'm hoping to talk about with this growing cohort of co-patients and caregivers is how to play the cancer card. I think there is opportunity here for some fun. In Leroy Sievers' Celebration of Life video, for instance, there is a recorded segment in which Leroy joked about calling up a fancy restaurant in the hopes of making a last-minute reservation. When he is told that there are no openings, he wanted to say, "But I have cancer!" just to see what the response would be.

There is another similar story from Randy Pausch who talked about being pulled over by a patrolman for speeding. Randy took a chance and explained that his excuse for speeding was that he had cancer. When the patrolman said he didn't look like he was sick, Randy lifted his shirt to display the surgical scars. Whatever the patrolman was thinking, he simply put away his ticket pad and told Randy not to speed anymore.

Yesterday, I told some visitors about using the cancer card to get rid of annoying telemarketing calls and requests for donations to admittedly other good causes. "I've just been diagnosed with metastatic colorectal cancer and have to be very careful of my finances right now." True, a bit nasty, but it gets rid of the caller.

A couple days ago, my eldest son played the cancer card so that he could get a weekend off work for a planned family trip to Niagara Falls. "I need the time to spend with my father before he begins his palliative chemotherapy the following week." Smart guy! Who's going to argue with him about that?

Crying Together

But there will undoubtedly be other circumstances in which laughter gives way to tears. We will share music, photos, quotes, and blog entries that are meaningful to us. Here is just one, again from Leroy Sievers, in answer to a question many people ask us:

"Does cancer hurt? You bet. It hurts in ways that transcend physical pain. That first diagnosis is like a knife into your heart. That first bleak prognosis? That's a punch to your stomach. Waiting for the results of a scan? Water torture - slow, agonizing, excruciating. It hurts in the dark hours of the night, when you're alone with your thoughts, and you have to confront the idea of your own death. It hurts when something simple reminds you that you may not be around in six months, a year, whatever. It hurts when you think about the things you are going to miss.

But that's not the worst of it. Cancer spreads the pain around. You see it in the tears of a friend when you tell them. You see it in the eyes of your doctor who knows that in a few seconds, he has to give you bad news. You see it in the eyes of your loved ones, friends and family, who want so much to help, but can't, and who are so scared for you and scared for the loss that your death will bring.

So to answer the questions, "does cancer hurt?" I haven't felt a thing - except for when it hurts so badly you can barely stand it." - Leroy Sievers, Does Cancer Hurt? 9-18-2006

If you are a patient, a care-giver, a friend, a family member, or someone simply interested in this strange journey, feel free. Write, send a photo, a hyperlink to some good music, a video, or some thoughts. We can get through this together.

An Unwanted Journey: Day 1038 - Incurable

2008-09-26T07:38:00.002-04:00

We picked up the long-term disability forms from the Grand River Regional Cancer Centre yesterday morning. My medical oncologist graciously agreed to fill them in, describing the treatment regimen and the overall medical context.

I knew what it would say beforehand, but reading it in black and white and with an authoritative medical signature attached was a little tough - "incurable".

As I recover from surgery and get ready for chemotherapy, that word keeps popping up, as do thoughts and images of the implications for me and my family. Sometimes, when I'm especially feeling the injustice of the situation, I turn the clock back and wonder what I might have done or others might have done to achieve a different outcome. The feelings of anguish and thoughts of what might have been are heightened by reading (on the GRRCC's homepage) that 90% of colorectal cancer is curable if found at an early stage (only 10% of those with colorectal cancer are curable if found at an advanced stage).

This week, my father underwent a colonoscopy where 4 polyps were discovered and excised, all of them benign. At 77, that's an excellent outcome, especially knowing that he doesn't need another colonoscopy until age 80. And now that I've been diagnosed, my first degree family members have the option of being tested by a colonoscopy at age 40 and older (instead of waiting until age 50 and then being tested only by a fecal occult blood test - FOBT - every 2 years). A similar situation exists for my uncle, currently being tested with a colonoscopy every 2 years, during which they usually find a polyp or 2 that is excised during the procedure.

If, if, if, if - if I had been tested with a colonoscopy at age 40 and older, we would have found the cancer at a very early stage. Even if we had tested at age 50, instead of 53, the outcome for me might be very different.

Incurable. What if. Might have been. Therein lies a kind of madness.

Instead, in my better moments, I realize that we are all incurable, terminally ill, biding time till the grave. What sets me apart these days is knowledge, knowing with the precision of a certain number of months when I will die. Sure, I will attempt to beat those odds, make the months and days keep adding up, confounding the medical statistics and even the members of my own medical team. In fact, I'll be doing everything within my power to hold on and give back.

But knowledge is not only power, it is a gift. Knowing what to expect medically in the months ahead, what I can and cannot do, what will likely work and what probably won't work - when I concentrate on those things, I feel empowered and blessed. And to some extent those who love and care for me also feel the benefits of "knowing".

Yes, it is sad. But all of us in my circle of care also know that there is some time available to us. We will find and take advantage of moments that might otherwise slip by unexploited. Those hugs, kisses, holding hands, glances of simple affection; drives in the countryside, quick day trips, visits with family and friends, coffee and lemon poppy seed loaves, sometimes a glass of wine or beer; discussions of what matters most to us, enjoying family photo albums, making new photographs - all will occur as usual but with additional poignancy and a fuller investment of time, energy, consciousness, and appreciation.

And then there are the practical aspects. I am simplifying my life. As an avid reader, I have accumulated a multitude of books over the years which, when viewed as a series of collections, documents stages and phases of my life story. But now, as I set priorities and make plans, I am donating those collections to others. This feels good. My wife and I are also looking at simplifying other aspects of our lives, getting rid of clutter and noise, and becoming reacquainted with priorities and those things that don't really matter too much. In fact, we are learning how simple many decisions can be because of that one word - incurable.

As one of my good friends would remind me, we are rediscovering balance. Because there are no longer guarantees of decades and years ahead - only months - recalibrating balance in my life has to occur and is happening. This is good.

An Unwanted Journey: Day 1036 - Global Cancer Initiative

2008-09-24T12:33:00.003-04:00

I watched a live webcast this morning of a plenary session of the Clinton Global Initiative in New York City in which Lance Armstrong announced a new global initiative for the Lance Armstrong Foundation, beginning today. Lance noted that he will be taking another shot at professional racing, hoping in part that this will raise the visibility of the global cancer initiative.

Refuse the Stigma

Perhaps the most important feature of the global cancer initiative is the attempt to remove the stigma associated with cancer diagnosis. "You are not a victim"- words from Bill Clinton about those of us with cancer. He was talking about Lance Armstrong's impact in fighting cancer, pointing specifically to the attitude Lance has promoted among those dealing with cancer. Yes, cancer is a scourge. But what Lance teaches us is that whatever the difficulties assailing us, "We are not victims." We are survivors. We have choices to make. We have opportunities to make a difference not only for ourselves, but for our caregivers, for others dealing with cancer, and for a world at large which will soon face cancer as the number one killer (estimated by 2010).

Collaborate With Others Against Cancer

Eight million people worldwide will die from cancer this year. Twelve million will be diagnosed with cancer.

Apart from the statistics that I am personally facing, statistics like these are truly frightening. Obviously, they help people like me transcend the exigencies of our own personal difficulties. But they do illustrate the scope of the challenge before us. Still, I am inspired and grateful to those leaders like Lance Armstrong who are taking steps to deal with cancer on a global basis. At a national level, I have been hoping and waiting for the energy and enthusiasm of the Lance Armstrong Foundation to move beyond the borders of the United States. Now the initiative is underway. Now is the time for Canada to partner.

Maybe Tonight, Maybe Tomorrow

I didn't know about this song until today. But I've purchased it and downloaded it to my iTunes library. I can't think of a better song to represent the juxtaposition of personal and global concerns about cancer and the decision to live strong in the face of the threat of cancer. Here are the lyrics (from Wideawake).

Wideawake songs
Maybe Tonight, Maybe Tomorrow lyrics